Generated by All in One SEO Pro v4.9.10, this is an llms.txt file, used by LLMs to index the site. # Polycystic kidney disease | PKD treatment research | PKD Foundation ## Sitemaps - [XML Sitemap](https://pkdcure.org/sitemap.xml): Contains all public & indexable URLs for this website. ## Posts - [In Memoriam of Dr. James Calvet](https://pkdcure.org/blog/in-memoriam-of-dr-james-calvet/) - On June 11th, 2026, the PKD community lost a friend, advocate, and scientific pioneer with the passing of Dr. James Calvet, Professor Emeritus of the University of Kansas Medical Center. Jim entered the world of PKD science after a fortuitous meeting with Dr. Jared Grantham, who intrigued Jim with the neoplastic phenotype of the cysts ## Pages - [Home Page](https://pkdcure.org/) - Polycystic kidney disease (PKD) is a genetic disorder characterized by the growth of cysts in the kidneys. These cysts can enlarge the kidneys and impair their function over time, leading to symptoms such as high blood pressure, abdominal pain, and eventually kidney failure. - [Data resources in PKD research](https://pkdcure.org/research/data-resources-in-pkd-research/) - Data resources in PKD research The PKD Foundation is dedicated to the support and advancement of PKD research. The FDA approval of total kidney volume as a biomarker for ADPKD progression demonstrated the value of data sharing in enhancing and accelerating research towards new treatments. By encouraging utilization of existing datasets, the Foundation hopes to - [Kaplan Award](https://pkdcure.org/research/kaplan-award/) - Kaplan Award Lillian Jean Kaplan International Prize for Advancement in the Understanding of Polycystic Kidney Disease The Lillian Jean Kaplan International Prize for Advancement recognizes an individual(s) whose seminal scientific work constitutes tangible achievement toward improving knowledge and treatment of PKD. More than one prize may be awarded, and it may be awarded to residents - [Patient Navigator Resource Page](https://pkdcure.org/patient-navigator-resource-page/) - [COE Clinician Resources](https://pkdcure.org/coe-clinician-resources/) - [Give](https://pkdcure.org/give/) - [PKDCON 2026](https://pkdcure.org/pkdcon26/) - [Grant Applications](https://pkdcure.org/research/grants/pkd-foundation-research-rfa/) - Request for Applications — Research GrantsApply Now!Overview of program goals and scope The PKD Foundation’s principal mission is to support basic, translational, and clinical research that will benefit patients with autosomal dominant and autosomal recessive polycystic kidney disease (ADPKD and ARPKD). Under this RFA, the PKD Foundation solicits research grant applications in the following - [Fellowship Applications](https://pkdcure.org/research/fellowships/pkd-foundation-fellowship-rfa/) - Request for Applications — FellowshipsApply for a 2024 Fellowship now! Overview of program goals and scope The PKD Foundation’s principal mission is to support basic, translational and clinical research that will benefit patients with autosomal dominant and autosomal recessive polycystic kidney disease (ADPKD and ARPKD). The PKD Foundation is interested in fostering research in the areas - [Education Handouts](https://pkdcure.org/education-handouts/) - [PKD Patient Handbooks](https://pkdcure.org/for-patients/patient-handbooks/) - Patient Handbooks Thank you for your interest in a free information packet on polycystic kidney disease (PKD). This complimentary packet of resources includes general information about PKD and a PKD Patient Handbook. We are proud to offer both a digital and print version of the information packet and patient handbook at no cost to you. - [Funded Grants](https://pkdcure.org/research/grants/funded-research/) - Current funded research The goal of the Research Grant and Fellowship Programs will fund critical research to increase understanding of the genetic and pathological processes involved in PKD and to accelerate the development of potential therapies for PKD patients. The review process The Review Committee was comprised of the PKDF Scientific Advisory Panel (SAP), additional - [ARPKD](https://pkdcure.org/about-the-disease/arpkd/) - What is ARPKD? Autosomal recessive polycystic kidney disease (ARPKD) is a rare genetic disorder occurring in approximately 1 in 25,000 children, equally affecting boys and girls. ARPKD can come as a scary, overwhelming diagnosis. And while ARPKD can cause death in the first month of life, almost 80% of ARPKD children survive the newborn period. Past - [ADPKD](https://pkdcure.org/about-the-disease/adpkd/) - What is ADPKD? Autosomal dominant polycystic kidney disease (ADPKD) is one of the most common, life-threatening genetic diseases. In ADPKD, fluid-filled cysts develop and enlarge in both kidneys, eventually leading to kidney failure. It is the fourth leading cause of kidney failure and more than 50 percent of people with ADPKD will develop kidney failure by age 50. Once a person - [Stages](https://pkdcure.org/about-the-disease/adpkd/what-are-the-stages-of-adpkd/) - What are the stages of ADPKD? If you have kidney damage and/or a decrease in kidney function for three or more months, it is called chronic kidney disease (CKD). There are five stages of CKD, with progressive symptoms. Stages of CKD Stage 1 Includes signs of mild kidney disease, with a normal GFR showing 90 - [For Donors](https://pkdcure.org/for-donors/) - [Health Complications](https://pkdcure.org/about-the-disease/adpkd/what-are-the-related-health-complications/) - What are the related health complications of ADPKD? PKD can affect organs other than the kidneys. The following list of potential problems may look long and overwhelming, but it is important to remember that most people do not have all of these problems. If you have PKD, you and your family should be aware of - [Newly Diagnosed](https://pkdcure.org/about-the-disease/newly-diagnosed/) - [Resource guide](https://pkdcure.org/for-volunteers/resource-guide/) - Resource Guide A guide to help PKDF Volunteers Are you looking for a resource to share? The PKD Connect staff is here to help volunteers find resources to share with the PKD community. pkdcure.org/what-is-adpkd Autosomal dominant polycystic kidney disease (ADPKD) is one of the most common, life-threatening genetic diseases. In ADPKD, fluid-filled cysts develop and enlarge in both - [PKD Connect Interpreter](https://pkdcure.org/get-involved/volunteer-with-us/remote-virtual-opportunities/interpreter/) - PKD Connect Interpreters PKD Connect Interpreters will translate emails and assist with returning phone calls on an as-needed basis. Volunteers will connect individuals with PKD Foundation programs and services as appropriate and assists with building a sense of community for non-English speaking patients and families. PKD Connect Interpreter Job Description Welcome to PKDF! - Information for PKD Foundation Volunteers Communication - [Federal Funding PKD Research](https://pkdcure.org/advocacy/federal-funding-pkd-research/) - Federal Funding for PKD ResearchDepartment of DefenseCongressionally Directed Medical Research Program (CDMRP) This program originated in 1992 via a Congressional appropriation to foster new approaches to biomedical research in response to the needs of its stakeholders — the American public, the military, and Congress. Peer Reviewed Medical Research Program (PRMRP) The PRMRP is part of - [PKD Foundation Centers of Excellence Search Results](https://pkdcure.org/coe-search-results/) - Find ADPKD care[put_wpgm id=4] To view a full list of centers click here. Reference To be a PKD Foundation Center of Excellence, a care center offers diagnostic and therapeutic services with identified staff responsible for most services in each of the following disciplines: Nephrology Radiology Nutrition Hepatology Genetics Pain management Patient navigation services Non-core specialists - [Why Join](https://pkdcure.org/research/the-adpkd-registry/why-join/) - [What causes ADPKD?](https://pkdcure.org/about-the-disease/adpkd/what-causes-adpkd/) - What causes ADPKD? Mutations (unintended changes or typos) in one of two genes (PKD1 or PKD2) account for most cases of ADPKD. Recently, researchers discovered a new gene, GANAB, that is believed to cause polycystic liver and kidney disease as well. Mutations of the first gene, PKD1, are the most common and account for about 85 percent of patients - [Oklahoma](https://pkdcure.org/get-connected/community/oklahoma/) - [Research Pipeline](https://pkdcure.org/research/pipeline/) - Research pipeline Since 1982, we've led the fight against PKD through the support of basic, translational, and clinical scientists; vital research funding; and patient education. Today, we're encouraged by the significant strides we're making to find treatments. We've gone from a single drug in clinical trials five years ago to an approved drug, tolvaptan, and - [Coronavirus](https://pkdcure.org/coronavirus/) - COVID-19 and PKD: What you should know The Pfizer-BioNTech Vaccine has been authorized for emergency use by the FDA in individuals above 5 years of age. View the fact sheet for recipients over 12 years of age and caregivers here, and for those between 5-11 here. On December 18, 2020, the Moderna Vaccine was also approved - [UpToDate](https://pkdcure.org/uptodatepages/) - [Social Media](https://pkdcure.org/for-volunteers/social-media-guidelines/) - Social Media for PKDF VolunteersSocial Media Policy The PKD Foundation utilizes social media to engage with the PKD community. Local PKD Communities may have local social media accounts approved by the Foundation and managed by volunteer PKD Connect Ambassadors and/or Walk Ambassadors. Volunteers are not permitted to set up social media accounts in connection with - [Careers](https://pkdcure.org/careers/) - Join our teamThank you for your interest in a career at the PKD Foundation!Openings There are no current job openings. Please check back for updates. The Regional Leadership Giving Director (RLGD) will collaborate with and report directly to the VP, Leadership Giving. The RLGD will play a vital role in the fundraising efforts of the - [The Peer Review Process](https://pkdcure.org/research/the-peer-review-process/) - The Peer Review Process The PKD Foundation strives to be transparent related to our decision-making processes. The following outlines the general composition of our grant review committees, who develop recommendations for funding, as well as the process we use as a Foundation to make funding decisions. If you have further questions about our processes or - [Leadership team](https://pkdcure.org/who-we-are/leadership-team/) - [Clinic Designation](https://pkdcure.org/clinic-designation/) - Clinic Designation 2024 Request for Applications DEADLINE: AUGUST 28 Overview of program goals and scope The ADPKD Centers of Excellence program is built upon the belief that the best way to provide ADPKD-centered care is through patient-focused, comprehensive care with the coordination and support of an integrated care team guided by patient navigation services. - [Research](https://pkdcure.org/research/) - [Cookies Policy](https://pkdcure.org/cookies-policy/) - [About the Foundation](https://pkdcure.org/who-we-are/) - We’re on a mission to #endPKD We’re the only organization in the U.S. solely dedicated to finding treatments and a cure for polycystic kidney disease (PKD). We fund research, education, advocacy, support, and awareness on a national and local level. Since 1982, we have proudly funded more than 1,300 research projects and leveraged $1.5B in - [Impact](https://pkdcure.org/who-we-are/impact/) - [Advocacy Champions Network](https://pkdcure.org/get-involved/volunteer-with-us/become-an-advocate/acn/) - Advocacy Champions Network The PKD Foundation’s Advocacy Champions Network (ACN) is a group of PKD community members from across the U.S. engaged in formal advocacy efforts with federal policymakers. Members of the ACN are hand-picked to share their personal stories and advance the legislative priorities of the PKD community. After completing training courses on topics - [Become a Mentor](https://pkdcure.org/get-involved/volunteer-with-us/remote-virtual-opportunities/become-a-mentor/) - [Remote/Virtual Opportunities](https://pkdcure.org/get-involved/volunteer-with-us/remote-virtual-opportunities/) - [In Your Community](https://pkdcure.org/get-involved/volunteer-with-us/in-your-community/) - [Community Volunteer Roles](https://pkdcure.org/get-involved/volunteer-with-us/in-your-community/community-roles/) - PKD Connect Ambassadors PKD Connect Ambassadors play a vital role in providing local support for PKD communities across the United States and serve as the frontline for individuals new to the PKD Foundation. In this role, volunteers provide educational opportunities and support to their local PKD community while connecting individuals to PKDF programs and services as appropriate. PKD Connect Ambassador - [Nutrition](https://pkdcure.org/about-the-disease/living-with-pkd/nutrition/) - Nutrition Currently no specific diet has been proven to make your polycystic kidneys better or keep them from getting worse. It is, however, ideal to eat a balanced and healthy diet to maintain optimal body conditions. A healthy body is able to fight infection better, and bounce back faster. Accumulation of waste products filtered by - [Kidney 101](https://pkdcure.org/about-the-disease/adpkd/kidney-101/) - Kidney 101 Typically, each of us is born with two kidneys. They are located in the back of the body on each side of the spine, tucked under the rib cage. Each kidney is about five inches long (12 cm), three inches wide (8 cm), and two inches thick (5 cm) with each one weighing - [What are the symptoms?](https://pkdcure.org/about-the-disease/adpkd/what-are-the-symptoms/) - What are the symptoms of ADPKD? Early in the disease, there are generally no symptoms at all. In fact, many people are never diagnosed with PKD because they have few or no symptoms. Often the first sign of PKD is high blood pressure, blood in the urine or a feeling of heaviness or pain in - [Get involved](https://pkdcure.org/get-involved/) - Get involvedWe are united in the fight to #endPKD. Together, we can: Help advance critical research for treatments and a cure for PKD. Educate our elected officials and ask for increased government spending on PKD research, dialysis support, and kidney transplant after care. Raise awareness to support every person affected by PKD. The Walk for - [2025 Impact Report](https://pkdcure.org/who-we-are/2025-impact-report/) - [Volunteer Roles](https://pkdcure.org/get-involved/volunteer-with-us/in-your-community/roles/) - PKD Connect Ambassadors PKD Connect Ambassadors play a vital role in providing local support for PKD communities across the United States and serve as the frontline for individuals new to the PKD Foundation. In this role, volunteers provide educational opportunities and support to their local PKD community while connecting individuals to PKDF programs and services as appropriate. PKD Connect Ambassador - [Education Video Learning Library](https://pkdcure.org/videolearninglibrary/) - [PKD Connect Peer Mentors](https://pkdcure.org/get-connected/peermentors/) - Peer Mentors PKD Connect Peer Mentors provide resources, guidance, motivation, and emotional support to an individual impacted by PKD. Peer mentors are familiar with the difficulties associated with polycystic kidney disease (PKD) and are open to sharing their own experience with PKD to support and encourage others. PKD Connect Peer Mentor Job Description We are excited that you are joining the PKD Connect - [Volunteer](https://pkdcure.org/get-involved/volunteer-with-us/) - Volunteer with us Volunteers are the heart of the PKD community. Our volunteers ensure that no one faces PKD alone. When you join our volunteer team, your time and efforts will impact the funds raised for PKD research. We are the only organization in the U.S. solely dedicated to finding treatments and a cure for PKD - [Centers of Excellence](https://pkdcure.org/research/centers-of-excellence/) - [Find Us On Social](https://pkdcure.org/find-us-on-social/) - [Advocacy](https://pkdcure.org/advocacy/) - [Atlanta](https://pkdcure.org/get-connected/community/atlanta/) - [Meet our Mentors](https://pkdcure.org/get-connected/peermentors/meet-our-mentors/) - Meet our mentors My name is Christine Laycock. I am a 53 y.o. Internal Medicine physician with PKD. I have an atypical presentation of PKD. My story begins with my mother having a ruptured and repaired cerebral aneurysm and significant hypertension at age 37. She did not have a renal ultrasound at that time. My - [For Volunteers](https://pkdcure.org/for-volunteers/) - Volunteer resourcesWelcome, volunteers! You are the heart of the PKD Foundation. The Volunteer resource pages give you all the tools you need in one place. You’ll find essential information such as updates from the PKD Foundation, forms and documents, upcoming training opportunities, marketing materials, and more!Volunteer Connection Calls keep our volunteers in the know! Join - [San Francisco](https://pkdcure.org/get-connected/community/san-francisco/) - [Community Meeting Toolkits](https://pkdcure.org/for-volunteers/community-meeting-toolkits/) - Community Meeting Toolkits Meeting Planner Meeting Purpose One of the biggest challenges PKD patients face is finding the right healthcare providers. In fact, “Where do I find a nephrologist that understands PKD?”, is one of the most often asked question we receive from patients and caregivers. PKD Foundation Centers of Excellence (COE) and Partner Clinics - [Salt Lake City](https://pkdcure.org/get-connected/community/salt-lake-city/) - [Advocacy 2026 Recap](https://pkdcure.org/advocacyrecap26/) - [Houston](https://pkdcure.org/get-connected/community/houston/) - [PKD Thrive](https://pkdcure.org/for-parents/pkd-thrive/) - Welcome to the PKD Thrivecommunity With the help of our communities in cities across the country and beyond, we provide a forum for patients who want to join in the fight to find treatments and cure for PKD. Connect with us to find out how you can make a difference in the lives of thousands - [Giving Block](https://pkdcure.org/givingblock/) - [Research Grants](https://pkdcure.org/research/grants/research-funding/research-grants/) - [Northeast Ohio](https://pkdcure.org/get-connected/community/northeast-ohio/) - [San Antonio](https://pkdcure.org/get-connected/community/san-antonio/) - [New England](https://pkdcure.org/get-connected/community/new-england/) - [PKD Parents](https://pkdcure.org/get-connected/community/parents/) - Welcome to the@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF90aXRsZSIsInNldHRpbmdzIjp7ImJlZm9yZSI6IiIsImFmdGVyIjoiIn19@community With the help of our communities in cities across the country and beyond, we provide a forum for patients who want to join in the fight to find treatments and cure for PKD. Connect with us to find out how you can make a difference in the lives of thousands in the - [For Parents](https://pkdcure.org/for-parents/) - Parents of children with PKD PKD affects children as well as adults. Cystic kidney disease in children devastates families, and dramatically affects quality of life for children who have it. For those who have lost a child, their lives are changed forever. ARPKD Autosomal recessive polycystic kidney disease, ARPKD, is a rare genetic disorder occurring - [Western New York](https://pkdcure.org/get-connected/community/western-new-york/) - [Twin Cities](https://pkdcure.org/get-connected/community/twin-cities/) - [Tidewater](https://pkdcure.org/get-connected/community/tidewater/) - [Tampa](https://pkdcure.org/get-connected/community/tampa/) - [St. Louis](https://pkdcure.org/get-connected/community/st-louis/) - [South Florida](https://pkdcure.org/get-connected/community/south-florida/) - [San Diego](https://pkdcure.org/get-connected/community/san-diego/) - [Sacramento](https://pkdcure.org/get-connected/community/sacramento/) - [Portland](https://pkdcure.org/get-connected/community/portland/) - [Pittsburgh](https://pkdcure.org/get-connected/community/pittsburgh/) - [Phoenix](https://pkdcure.org/get-connected/community/phoenix/) - [Philadelphia](https://pkdcure.org/get-connected/community/philadelphia/) - [North Texas](https://pkdcure.org/get-connected/community/north-texas/) - [New York City](https://pkdcure.org/get-connected/community/new-york-city/) - [New Orleans](https://pkdcure.org/get-connected/community/new-orleans/) - [New Jersey](https://pkdcure.org/get-connected/community/new-jersey/) - [Nebraska](https://pkdcure.org/get-connected/community/nebraska/) - [National Capital](https://pkdcure.org/get-connected/community/national-capital/) - [Nashville](https://pkdcure.org/get-connected/community/nashville/) - [Milwaukee](https://pkdcure.org/get-connected/community/milwaukee/) - [Memphis](https://pkdcure.org/get-connected/community/memphis/) - [Los Angeles](https://pkdcure.org/get-connected/community/los-angeles/) - [Long Island](https://pkdcure.org/get-connected/community/long-island/) - [Las Vegas](https://pkdcure.org/get-connected/community/las-vegas/) - [Kansas City](https://pkdcure.org/get-connected/community/kansas-city/) - [Jacksonville](https://pkdcure.org/get-connected/community/jacksonville/) - [Iowa](https://pkdcure.org/get-connected/community/iowa/) - [Indianapolis](https://pkdcure.org/get-connected/community/indianapolis/) - [Hudson Valley](https://pkdcure.org/get-connected/community/hudson-valley/) - [Detroit](https://pkdcure.org/get-connected/community/detroit/) - [Denver](https://pkdcure.org/get-connected/community/denver/) - [Connecticut](https://pkdcure.org/get-connected/community/connecticut/) - [Cincinnati Dayton](https://pkdcure.org/get-connected/community/cincinnati-dayton/) - [Chicago](https://pkdcure.org/get-connected/community/chicago/) - [Charlotte](https://pkdcure.org/get-connected/community/charlotte/) - [Charleston](https://pkdcure.org/get-connected/community/charleston/) - [Central Ohio](https://pkdcure.org/get-connected/community/central-ohio/) - [Central Florida](https://pkdcure.org/get-connected/community/central-florida/) - [Birmingham](https://pkdcure.org/get-connected/community/birmingham/) - [Baltimore](https://pkdcure.org/get-connected/community/baltimore/) - [Austin](https://pkdcure.org/get-connected/community/austin/) - [Seattle](https://pkdcure.org/get-connected/community/seattle/) - [Clinical Trials](https://pkdcure.org/research/clinical-trials/) - [All Past Funded Research](https://pkdcure.org/research/past-funded-research/) - Past PKD research fellowships To move us forward in finding treatments, we select outstanding researchers as recipients of the PKD Foundation Fellowships. The fellowships recognize early-career scientists whose achievements and potential identify them as rising stars – the next generation of scientific leaders in PKD research. Each fellow receives $60,000 a year for two years. - [PKD Connect Peer Mentors](https://pkdcure.org/volunteers/pkd-connect-peer-mentors/) - Peer Mentors PKD Connect Peer Mentors provide resources, guidance, motivation, and emotional support to an individual impacted by PKD. Peer mentors are familiar with the difficulties associated with polycystic kidney disease (PKD) and are open to sharing their own experience with PKD to support and encourage others. PKD Connect Peer Mentor Job Description We are excited that you are joining the PKD Connect - [Fellowships](https://pkdcure.org/research/fellowships/) - Past PKD research fellowships To move us forward in finding treatments, we select outstanding researchers as recipients of the PKD Foundation Fellowships. The fellowships recognize early-career scientists whose achievements and potential identify them as rising stars – the next generation of scientific leaders in PKD research. Each fellow receives $60,000 a year for two years. - [PKD Life magazine](https://pkdcure.org/pkdlife/) - PKD Life, a free magazine distributed by the PKD Foundation, focuses on the topics that matter most to our community members. Each issue includes stories written with physicians, health care providers, patients, and caregivers. If you have any feedback or you would like to be featured in an upcoming edition, please email pkdlife@pkdcure.org. Past issues - [Voices of PKD](https://pkdcure.org/voices-of-pkd/) - [Volunteer Resources Hub](https://pkdcure.org/volunteers/) - PKD Connect Ambassadors PKD Connect Ambassadors play a vital role in providing local support for PKD communities across the United States and serve as the frontline for individuals new to the PKD Foundation. In this role, volunteers provide educational opportunities and support to their local PKD community while connecting individuals to PKDF programs and services as appropriate. PKD Connect Ambassador - [Partners](https://pkdcure.org/who-we-are/partners/) - [Fundraising Ambassadors](https://pkdcure.org/get-involved/volunteer-with-us/remote-virtual-opportunities/fundraising/) - Fundraising Ambassadors The Fundraising Ambassador plays an important role in the local PKD community by identifying local fundraising opportunities and organizing the event. With the support from PKD Foundation staff, your contribution will facilitate fundraising that supports the mission of the PKD Foundation. Fundraising Ambassador — Volunteer Job Description Please reach out to Danielle Rose - [Stewardship Ambassadors](https://pkdcure.org/get-involved/volunteer-with-us/in-your-community/stewardship-ambassador/) - Stewardship Ambassador The Stewardship Ambassador is vital in helping the PKDF share gratitude with donors who support the foundation through monetary donations. The Stewardship Ambassador will thank donors through various types of communication; phone calls, emails, hand-written notes, etc. Stewardship Ambassador Job Description Welcome to PKDF! - Information for PKD Foundation Volunteers Communication Tools Training - [Advocacy Champions](https://pkdcure.org/for-volunteers/advocacy-champions/) - Advocacy Champions The Advocacy Champion Network (ACN) is vital to raising awareness of PKD and increasing research dollars to bring treatments and therapies to patients and to provide the best care for those who are reliant on dialysis or a kidney transplant to survive. By joining others and sharing their experience, the ACN will help to further legislation, regulation, - [Walk for PKD Ambassadors](https://pkdcure.org/get-involved/volunteer-with-us/in-your-community/walk/) - Walk for PKD Ambassadors Our Walk for PKD Ambassadors serve an important role in their community. They are responsible for planning and executing their local Walk for PKD with support from PKD Foundation staff. This volunteer role raises important financial support and plans an event that brings the local PKD community together. Your contribution will - [PKD Connect Ambassadors](https://pkdcure.org/volunteers/pkd-connect-ambassadors/) - Peer Mentors PKD Connect Peer Mentors provide resources, guidance, motivation, and emotional support to an individual impacted by PKD. Peer mentors are familiar with the difficulties associated with polycystic kidney disease (PKD) and are open to sharing their own experience with PKD to support and encourage others. PKD Connect Peer Mentor Job Description We are excited that you are joining the PKD Connect - [Outreach Ambassadors](https://pkdcure.org/get-involved/volunteer-with-us/in-your-community/outreach-ambassadors/) - Outreach Ambassadors The Outreach Ambassadors Program is meant to build new bridges between the PKD Foundation and previously underserved communities. The Outreach Ambassadors Program will also guide communities of color through the Foundation’s resources on disease management, treatment options, and navigating health care systems. Outreach Ambassador Job Description Welcome to PKDF! - Information for PKD - [Financials](https://pkdcure.org/who-we-are/financial-and-organizational-information/) - Financial and organizational information Since our founding in 1982, we have raised millions of dollars toward finding a treatment and a cure for PKD. However, what’s even more important than the money we raise is what we do with it. We are extremely careful with the dollars you have entrusted to our care. More information - [The ADPKD Registry](https://pkdcure.org/research/the-adpkd-registry/) - [For Patients](https://pkdcure.org/for-patients/) - [Funding Opportunities](https://pkdcure.org/research/grants/research-funding/) - Research funding The mission of the PKD Foundation is to give hope. We fund research, advocate for patients, and build a community for all impacted by PKD. To achieve this, we support investigator-initiated research that range across the research continuum, including basic, translational and clinical research. Additionally, we are committed to supporting a robust pipelines - [PKD Foundation in the News](https://pkdcure.org/pkd-foundation-in-the-news/) - [International PKD Organizations](https://pkdcure.org/get-connected/international-pkd-organizations/) - International AffiliatesWe are a proud member of PKD International, a global alliance of patient organizations dedicated to a cure for polycystic kidney disease (PKD). We are leading the fight against PKD for the millions worldwide by uniting patients and medical professionals committed to ending PKD, providing opportunities to learn the latest on PKD, and supporting - [Resources](https://pkdcure.org/resources/) - [PKD Outcomes Consortium (PKDOC)](https://pkdcure.org/research/pkdoc/) - PKD Outcomes Consortium (PKDOC)2021 PKD Regulatory Summit The Critical Path Institute’s Polycystic Kidney Disease Outcomes Consortium (PKDOC), the PKD Foundation, and Otsuka collaborated to create the 2021 PKD Regulatory Summit on May 19–20, 2021. Together with key stakeholders from the pharmaceutical industry and academic setting, foundations, patient advocacy groups, individuals living with PKD and regulatory agencies - [Get Connected](https://pkdcure.org/get-connected/) - [Financial Assistance](https://pkdcure.org/for-patients/financial-assistance/) - [Contact us](https://pkdcure.org/contact-us/) - Contact usThank you for your interest in learning more about polycystic kidney disease (PKD) and the PKD Foundation. We look forward to hearing from you soon! Please note: We do not employ any medical professionals and cannot answer specific medical questions — other than what has been provided by medical advisors on our website - [PKD Awareness Day](https://pkdcure.org/get-involved/awarenessday/) - On September 4th every year, we recognize PKD Awareness Day to spread the word about polycystic kidney disease (PKD). Will you raise your voice with us? Spread the wordWhat is PKD? Polycystic kidney disease (PKD) is a chronic, genetic disease causing uncontrolled growth of fluid-filled cysts in the kidneys. As the cysts accumulate more fluid, they - [Become a Stakeholder Reviewer](https://pkdcure.org/get-involved/volunteer-with-us/support-research-programs/become-a-stakeholder-reviewer/) - Become a Stakeholder Reviewer PKDF demonstrates a patient-centric approach to our mission by incorporating the views of persons affected by polycystic kidney disease into the PKDF grant review process. Stakeholders will read and evaluate research study applications for relevance to the PKD community’s needs and concerns and actively participate in peer review panel discussions. We - [Education Video Library](https://pkdcure.org/education-video-library/) - [For Clinicians And Researchers](https://pkdcure.org/for-clinicians-and-researchers/) - [Industry Alliance](https://pkdcure.org/research/industry-alliance/) - Engage with the PKD Foundation The PKD Foundation is the only organization in the U.S. solely dedicated to finding treatments and a cure for polycystic kidney disease (PKD) and to improving the lives of those it affects. Since 1982, we have proudly funded more than 1,300 research projects and leveraged $1.5B in research funds, while serving - [Clinical Trial Awareness Program](https://pkdcure.org/research/clinical-trial-awareness-program/) - Accelerating Clinical Trials (ACT) Alerts One of the largest impediments to patient participation in research begins with awareness. We believed it was our goal to address this challenge and aim to increase awareness of PKD clinical studies among patients and families. The goal is to simplify the process of finding clinical studies for PKD patients in - [Vehicle Donation](https://pkdcure.org/vehicle-donation/) - Vehicle Donation Through the PKD Foundation Vehicle Donation Program, you can donate your vehicle and designate the funds to the PKD Foundation. With just one phone call, you can turn your old vehicle into hope for treatments and a cure to end PKD. It only takes a few minutes to make a difference of a - [Fiscal Year End 2025](https://pkdcure.org/fiscal-year-end-2025/) - [Grants](https://pkdcure.org/research/grants/) - [Privacy Policy](https://pkdcure.org/privacy-policy/) - Privacy Policy The PKD Foundation is committed to safeguarding your privacy on our website located at https://pkdcure.org. We use this privacy policy to clearly disclose to you our privacy practices in a manner that is easy to understand. If there is something you do not understand about our privacy practices, please feel free to contact - [PKD Foundation Podcast](https://pkdcure.org/pkd-foundation-podcast/) - [For Caregivers](https://pkdcure.org/for-caregivers/) - [Find Care](https://pkdcure.org/get-connected/find-care/) - [Working with your doctor](https://pkdcure.org/about-the-disease/living-with-pkd/working-with-your-doctor/) - Working with your doctor ​What kind of doctor should I see? In addition to your general practitioner (also called an internist), you should also see a doctor who specializes in kidneys. A nephrologist (kidney specialist) will be able to advise you best on how to care for your polycystic kidneys and the other related symptoms. Ideally you would find - [Community Reaction Panel](https://pkdcure.org/get-involved/volunteer-with-us/remote-virtual-opportunities/community-reaction-panel/) - Community Reaction Panel The PKD Foundation Community Reaction Panel provides feedback on pre-determined topics of interest to Industry Alliance partners and PKD Foundation programs and services. The panel consists of patients and caregivers with varied experiences across the continuum of disease progression and includes experience with ADPKD and ARPKD. Community Reaction Panel Job Description Join us - [PKD Care Team Grants](https://pkdcure.org/research/grants/research-funding/pkd-care-team-grants/) - PKD Care Team Grants Request for ApplicationsOverview of program goals and scope The ADPKD Centers of Excellence program is built upon the belief that the best way to provide ADPKD-centered care is through patient-focused, comprehensive care with the coordination and support of an integrated care team guided by patient navigation services. The program’s mission stands - [About the Disease](https://pkdcure.org/about-the-disease/) - [UptoDate Treatments](https://pkdcure.org/research/research-medical-professionals/) - UpToDate information on treating PKD UpToDate is the only clinical decision support resource associated with improved outcomes. More than 80 research studies demonstrate its impact on improved patient care and hospital performance. We are committed to providing resources for medical professionals to educate and empower their patients with PKD to manage and improve their health. To - [Terms and Conditions](https://pkdcure.org/terms-and-conditions/) - PKD Foundation Website Terms of Use This website is an educational and informational service provided by the PKD Foundation. By using the website, you agree to these Website Terms of Use. We may amend these terms from time to time so please check back here frequently for updates. THIS AGREEMENT CONTAINS A BINDING ARBITRATION PROVISION - [Become an Advocate](https://pkdcure.org/get-involved/volunteer-with-us/become-an-advocate/) - Become an advocate Join us in educating your elected officials about how they can help fight PKD. Your voice is a vital piece of the puzzle for helping increase PKD research dollars to bring treatments and therapies to patients, and provide the best care for those who are reliant on dialysis or a kidney transplant - [Community](https://pkdcure.org/get-connected/community/) - Welcome to thePKD community Our local Communities, and the volunteers who lead them, are the backbone of the PKD community. Whether you become a local PKD Community leader or simply attend a local event or meeting, don’t wait any longer . . . get involved today! Find your local PKD CommunityWhat is a Community? Communities - [Living with PKD](https://pkdcure.org/about-the-disease/living-with-pkd/) - Living with PKD If you or someone you care about live with PKD, some of your top priorities are to maintain a high quality of life and manage the disease. This means having a well-balanced diet, staying physically active, learning how to manage pain and finding effective ways to communicate with your health care team. - [All Resources](https://pkdcure.org/all-resources/) - [Delaware](https://pkdcure.org/get-connected/community/delaware/) - [PKD Care Team Awardees](https://pkdcure.org/research/grants/research-funding/pkd-care-team-grants/pkd-care-team-awardees/) - PKD Care Team Grant AwardeesOverview of program Welcome to the esteemed Care Team Grant awardees of the ADPKD Centers of Excellence program, showcasing a dedication to patient-centric care. These institutions have secured grants to bolster their care teams, fostering patient navigation and supporting comprehensive ADPKD-centered care. Aligned with the program's pillars of research, enhanced care, - [Should I stop eating protein?](https://pkdcure.org/should-i-stop-eating-protein/) - More about protein Name of food Serving size Protein (g) Pinto Beans, cooked 1/2 cup 11 Adzuki Beans, cooked 1/2 cup 9 Lentils, cooked 1/2 cup 9 Edamame, cooked 1/2 cup 9 Black Beans, cooked 1/2 cup 8 Red Kidney Beans, cooked 1/2 cup 8 Chickpeas, cooked 1/2 cup 7 Black-eyed Beans, cooked 1/2 cup - [Should I stop eating salt?](https://pkdcure.org/should-i-stop-eating-salt/) - Should I stop eating salt? Name of Food Sodium (mg) 1 cup Baked black bean (canned) with pork and tomato sauce 1140 One 4’’ bagel 220-400 Fast foods, cheeseburger, double patty, with condiments and vegetables 1051 5 Fast food-hush puppies 965 1 cup chicken noodle soup (commercial) 1050 2 slices of ham (regular) 739 1 - [Diagnosis](https://pkdcure.org/about-the-disease/adpkd/diagnosis/) - How is ADPKD diagnosed? Currently, there are three main tests that are used to screen for ADPKD: Ultrasound Computed tomography (CT) Magnetic resonance imaging (MRI) Ultrasound is the most common and least costly screening method for PKD. There are accepted standards for ultrasound testing to determine if you have PKD. These standards include the number of cysts - [Community Engagement Grants](https://pkdcure.org/research/grants/research-funding/community-engagement-grants/) - PKD Community Engagement Grants Overview of program goals and scope The ADPKD Centers of Excellence program is built upon the belief that the best way to provide ADPKD-centered care is through patient-focused, comprehensive care with the coordination and support of an integrated care team guided by patient navigation services. The program’s mission stands on three - [Pregnancy and PKD](https://pkdcure.org/about-the-disease/living-with-pkd/pregnancy-and-pkd/) - Pregnancy and PKD The diagnosis of PKD is most commonly made by pre-symptomatic screening of at-risk patients with a positive family using ultrasonography which is inexpensive, safe, and readily available. Alternatively, incidental findings of kidney cysts in at-risk patients who undergo imaging studies for other indications may also lead to the diagnosis of PKD. In both scenarios, early diagnosis - [List of Centers](https://pkdcure.org/research/coe-locations/) - ← Go back to the Care Centers PageList of Centers Centers of ExcellenceBeth Israel Deaconess Medical Center Columbia University Medical Center Emory University Geisinger Clinic Indiana University School of Medicine Mayo Clinic (Arizona) Mayo Clinic (Jacksonville) Mayo Clinic (Rochester) Medical University of South Carolina Nephrology Associates of Tidewater Saint Louis University St. Luke's Clinic (ID) Swedish - [Available Treatment](https://pkdcure.org/about-the-disease/living-with-pkd/treatments/) - Tolvaptan treatment for ADPKD Early in the disease, there are generally no symptoms at all. In fact, many people are never diagnosed with PKD because they have few or no symptoms. Often the first sign of PKD is high blood pressure, blood in the urine or a feeling of heaviness or pain in the back - [Founders](https://pkdcure.org/who-we-are/founders/) - [What causes ARPKD?](https://pkdcure.org/about-the-disease/arpkd/what-causes-arpkd/) - What causes ARPKD? Autosomal recessive polycystic kidney disease is caused by a mutation in chromosome 6 (PKHD1 gene). In recessive disorders such as ARPKD, the child must inherit a copy of the PKHD1 gene from each parent. Since the parents each have only one copy of the disease gene, they do not have the disease and are referred - [Diagnosis](https://pkdcure.org/about-the-disease/arpkd/diagnosis/) - How is ARPKD diagnosed? Typically in ARPKD, the kidneys appear to be larger than normal. In some babies, prenatal ultrasound can detect the enlarged kidneys as early as 18 weeks after conception. Some families may also hear their doctor say the kidneys look “echogenic” (more white) during an ultrasound, which can be an indicator of kidney problems such as - [Lifestyle](https://pkdcure.org/about-the-disease/living-with-pkd/lifestyle/) - LifestyleExercise and sports Exercise is an important part of maintaining good, overall health. Regular exercise can decrease your blood pressure and stress as well as improve muscle strength, heart function and stamina. It can also enhance a sense of well-being. In general, you will do much better on dialysis and with a transplant if you - [Support Research Programs](https://pkdcure.org/get-involved/volunteer-with-us/support-research-programs/) - [Symptoms](https://pkdcure.org/about-the-disease/arpkd/what-are-the-symptoms-2/) - What are the symptoms of ARPKD? In autosomal recessive polycystic kidney disease (ARPKD), symptoms can begin prenatally when small cysts form in the last section of the nephron called the collecting tubule. A cyst is a balloon-like widening of the tubule. Due to the numerous nephrons with small balloon-like dilatations, the kidneys can become quite - [Chronic pain management](https://pkdcure.org/about-the-disease/living-with-pkd/chronic-pain-management/) - Chronic pain management Chronic pain is one of the most common problems for patients with PKD. The pain is usually in the back or the side and occasionally in the stomach. It can be intermittent and mild requiring only occasional pain medicine such as acetaminophen (Tylenol). However, in a small number of patients with severe PKD, the pain - [FAQs](https://pkdcure.org/faqs/) - [State fundraising notices](https://pkdcure.org/who-we-are/financial-and-organizational-information/state-fundraising-notices/) - State fundraising notices Although our financial report is always sent free to anyone requesting a copy, certain States require us to advise you that a copy of our financial report is available from them. Your gift is very much appreciated and fully deductible as a charitable contribution. A copy of our latest financial report may - [Tissue donation](https://pkdcure.org/research/tissue-donation/) - Donating PKD affected kidneys for research Researchers continue to make breakthroughs in in PKD research, often with the help of donated cystic kidney tissue. Polycystic kidneys retrieved for research at the time of nephrectomy (surgical removal of non-functioning kidneys) provide an opportunity for scientists to study the cells and tissues that contain the genetic mutations - [Kidney Month](https://pkdcure.org/kidneymonth/) - For National Kidney Month, we challenge the PKD community to take action to spread the word about polycystic kidney disease (PKD). PKD is a chronic, genetic disease that causes fluid-filled cysts in the kidneys that often lead to kidney failure. There is no cure. In 2018, the very first ADPKD treatment in the United States - [Matching Gift](https://pkdcure.org/give/matching-gift/) - Let your company double or triple your impact!Did you know that hundreds of employers match donations made to the PKD Foundation? Last year, these matching gift programs provided $154,075, helping us advance our vision to #endPKD. Use the search tool below and discover which companies match donations to the PKD Foundation. You'll also find access - [Awareness Day Graphics](https://pkdcure.org/get-involved/awarenessday/graphics/) - Download Graphics - [Hope Line](https://pkdcure.org/get-connected/hope-line/) - [Advocacy Action Center](https://pkdcure.org/advocacy/advocacy-action-center/) - [Research Findings](https://pkdcure.org/research/the-adpkd-registry/research-findings/) - [What to Expect](https://pkdcure.org/research/the-adpkd-registry/what-to-expect/) - [Kidney Cyst Sclerotherapy](https://pkdcure.org/research/kidney-cyst-sclerotherapy/) - Kidney Cyst Sclerotherapy ADPKD patients commonly report symptoms such as abdominal or flank pain and fullness, which can often be explained by enlarged kidney or liver cysts. As cysts grow, they press on the surrounding parenchyma (kidney tissue or liver tissue) which can lead to obstruction of blood or urine flow. Over time, these enlarged - [What are the related health complications with ARPKD?](https://pkdcure.org/about-the-disease/arpkd/what-are-the-related-health-complications-with-arpkd/) - What are the related health complications with ARPKD? ARPKD affects both kidneys and the liver. Affected children may have significant kidney involvement at the time of birth. In-utero, urine production is a critical factor in maintaining normal amniotic fluid levels. When amniotic fluid levels are very low, lung development can be impaired. In some newborns with low levels - [Types of kidney donation](https://pkdcure.org/about-the-disease/living-with-pkd/transplant/types-of-donation/) - Types of kidney donation There are two ways to get a kidney transplant — through a living donation or through a deceased donation.Living donation Living donation is when a living person decides to donate a kidney (or other organ) to someone who needs a transplant. 6,000 organ transplants a year are made possible by living donors. The - [Pre-transplant preparation](https://pkdcure.org/about-the-disease/living-with-pkd/transplant/pre-transplant-preparation/) - TransplantWhen you and your doctor agree it is time for you to be evaluated for a transplant, you undergo a series of tests to assess your options. You’ll be evaluated for potential issues like heart disease, obesity, and diabetes. A social worker or transplant coordinator will discuss the logistics with you as well; things like - [Life after transplant](https://pkdcure.org/about-the-disease/living-with-pkd/transplant/life-after-transplant/) - Life after transplant Transplant surgery is a major operation and comes with risks for complications just like any other. During the surgery, you will receive general anesthesia and possibly other forms of pain-blocking anesthetic as well. Your transplant surgeon will make an incision in your lower abdomen to insert the new kidney and connect it to your blood - [Kidney Allocation System (KAS)](https://pkdcure.org/about-the-disease/living-with-pkd/transplant/kidney-allocation-system/) - Kidney Allocation System (KAS) On Dec. 4, 2014, the United Network for Organ Sharing (UNOS) and the Organ Procurement and Transplantation Network (OPTN) enacted a new approach to allocating kidneys to those on the transplant waiting list. The previous kidney matching system helped tens of thousands of people successfully receive kidney transplants, but there were things - [About donating your kidney](https://pkdcure.org/about-the-disease/living-with-pkd/transplant/about-donating-your-kidney/) - About donating your kidney Page last reviewed June 2021 - [Transplant](https://pkdcure.org/about-the-disease/living-with-pkd/transplant/) - Transplant With more than 100,000 people waiting for a kidney in the United States, it is important to educate yourself and your family about transplantation as early as possible so that you are prepared. There are many questions when it comes to transplantation. When is the right time – before dialysis or after? What is - [Dialysis](https://pkdcure.org/about-the-disease/living-with-pkd/dialysis/) - Dialysis Dialysis is a kidney replacement option, when transplant is not immediately available, that does some of the things healthy kidneys do. It is needed when your own kidneys fail or can no longer function well enough to take care of your body’s needs. There are two main types of dialysis: hemodialysis and peritoneal dialysis. - [National Volunteer Week](https://pkdcure.org/for-volunteers/national-volunteer-week/) - National Volunteer Week Volunteers are the heart of the PKD community and ensure no one faces polycystic kidney disease alone. The first local volunteer community was formed in 1987 and, since then, the PKD Foundation has been committed to growing our volunteer program to meet the evolving needs of all impacted by PKD. Our local - [Event submission form](https://pkdcure.org/for-volunteers/event-submission-form/) - Event submission form Home Advocacy Champions Community Reaction Panel Fundraising Ambassadors Peer Ambassadors PKD Connect Ambassadors PKD Connect Interpreters PKD Connect Mentors Stewardship Ambassadors Walk for PKD Ambassadors Sue Full Director of Community Fundraising suef@pkdcure.org Nicole Harr Director of Community Engagement nicoleh@pkdcure.org Danielle Rose Community Fundraising Specialist danieller@pkdcure.org Ireland Christensen Community Fundraising Coordinator irelandc@pkdcure.org Page - [Legislative Priorities](https://pkdcure.org/advocacy/legislative-priorities/) - [What are cysts?](https://pkdcure.org/about-the-disease/adpkd/what-are-cysts/) - [PKD Awareness Day](https://pkdcure.org/awarenessday/) - On September 4th every year, we recognize PKD Awareness Day to spread the word about polycystic kidney disease (PKD). Will you raise your voice with us? Spread the wordWhat is PKD? Polycystic kidney disease (PKD) is a chronic, genetic disease causing uncontrolled growth of fluid-filled cysts in the kidneys. As the cysts accumulate more fluid, they - [ARPKD PFDD](https://pkdcure.org/el-pfdd/) - ARPKD Voice of the Patient Report Externally-Led Patient-Focused Drug Development Meeting for ARPKD The PKD Foundation, the only organization in the U.S. solely dedicated to finding treatments and a cure for PKD and improving the lives of those affected, hosted its first-ever Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting on Autosomal Recessive PKD (ARPKD) on August - [Donate Online](https://pkdcure.org/give/donate-online/) - [Executive leadership](https://pkdcure.org/who-we-are/executive-leadership/) - Executive LeadershipFrom just a couple staff members and a doctor with a vision, we have grown to be the largest PKD patient advocacy organization in the world. Located in Kansas City, we are run by a dedicated staff proud to be the voice for the millions of people impacted by polycystic kidney disease.More information Executive - [Clinical Trial FAQs](https://pkdcure.org/research/clinical-trials/clinicaltrialfaqs/) - Clinical Trial FAQsClinical trials are human studies of new treatments or therapies for a disease to ensure that it is both safe and effective. By participating in a clinical trial, you will not only have access to PKD experts, but you might contribute to a medical breakthrough that will impact how PKD is managed for the - [UI Kit](https://pkdcure.org/ui-kit/) - [Blog](https://pkdcure.org/resources/blog/) - AboutThe PKD Foundation Blog is contributed to by PKD Foundation staff and members of our incredible community. Focused on bringing you important PKD and Foundation updates, our blogs cover advocacy initiatives; awareness events; education for patients, caregivers, and health care professionals; and updates from and for our researchers. Subscribe AdvocacyAwarenessEducationResearch[wp_blog_designer id="1"] - [Donor Privacy and Confidentiality Policy](https://pkdcure.org/donor-privacy-and-confidentiality-policy/) - Donor privacy and confidentiality policyYour trust and confidence are important to us. The purpose of this policy is to state the position of the PKD Foundation on donor confidentiality and donor anonymity and will guide the actions of the Board of Directors, the CEO and staff and committee members who may serve the Foundation, regarding ## Resources - [PKDCON Continued: Your Questions Answered](https://pkdcure.org/resources/pkdcon-continued-your-questions-answered/) - In this webinar, leading PKD experts will answer attendee-submitted questions from topics reviewed at PKDCON, along with new questions that have emerged since the event. Questions will be collected during registration and throughout the webinar, and the discussion will be moderated by a PKD Foundation staff member. Whether you attended PKDCON or were unable to - [Mayo Clinic Polycystic Kidney Disease (PKD) Resource Center](https://pkdcure.org/resources/mayo-clinic-polycystic-kidney-disease-pkd-resource-center/) - The Mayo Clinic Polycystic Kidney Disease (PKD) Resource Center provides comprehensive, evidence-based education to support individuals and families affected by PKD. This curated collection of articles and videos is designed to inform patients, caregivers, and the general public about all aspects of PKD—ranging from early diagnosis and genetic testing to lifestyle management, treatment options, and - [Introducing PKD Foundation Centers of Excellence](https://pkdcure.org/resources/introducing-pkd-foundation-centers-of-excellence/) - Published on November 22, 2022 | At the PKD Foundation, we're constantly evaluating how we can better help patients and families get the PKD care they need. In recent years, more and more data is highlighting inconsistencies in quality of care. It's time to tackle that head-on. In order to provide the care ADPKD patients - [Why the Rare Pediatric Disease Priority Review Voucher Matters for the PKD Community](https://pkdcure.org/resources/why-the-rare-pediatric-disease-priority-review-voucher-matters-for-pkd/) - Innovating new treatments for rare diseases is never simple. And when the patients are children, the challenges can be even more complex. The Rare Pediatric Disease Priority Review Voucher (RPD-PRV) program is one of the key tools designed to help address these challenges. It encourages researchers and companies to focus on conditions that urgently need - [PKD Foundation Applauds Ground-Breaking Introduction of the PKD Cures Act in Congress](https://pkdcure.org/resources/pkd-foundation-applauds-ground-breaking-introduction-of-the-pkd-cures-act-in-congress/) - First-ever PKD-specific federal legislation aims to advance the path toward new treatments and a cure for more than 500,000 Americans Kansas City, MO (6/5/2026) — The PKD Foundation applauds the introduction of the PKD Cures Act, the first bill ever introduced in Congress specifically focused on polycystic kidney disease (PKD). This landmark bipartisan legislation would strengthen - [Mental Health& PKD: Expert Answers to Community Questions with Cristen Wathen, Ph.D., LCPC, NCC.](https://pkdcure.org/resources/mental-health-pkd-expert-answers-to-community-questions-with-cristen-wathen-ph-d-lcpc-ncc/) - We sat down with Cristen Wathen, Ph.D., LCPC, NCC., to voice real questions from the community about mental health and life with PKD. Dr. Wathen is a counselor educator, tenured associate professor at Palo Alto University, whose work is deeply shaped by her lived experience with chronic illness. As both a kidney and liver transplant recipient, - [Mental Health Resources for the PKD Community](https://pkdcure.org/resources/mental-health-resources-for-the-pkd-community/) - Managing a chronic disease like PKD can be stressful and overwhelming at times—but whether you’re living with PKD, caring for someone who is, or supporting a loved one, you’re not alone. Here are a few resources and simple ways to support your mental health and emotional well-being. Call our HOPE Line: If you need immediate support, dial 844.PKD.HOPE (844.753.4673) - [PKD Advocacy in Action: What it Means and How to Get Involved](https://pkdcure.org/resources/pkd-advocacy-in-action-what-it-means-and-how-to-get-involved/) - This session will provide an overview of the PKD Foundation’s current legislative priorities, the state of PKD research funding, and highlights from Advocacy Day on Capitol Hill. Helping lead this discussion is the Foundation’s advocacy partner, CURA Strategies, a leading bipartisan strategic communications and public affairs agency. Whether you’re new to advocacy or looking for - [Shared Decision-Making in ADPKD / Collaborating with your Provider](https://pkdcure.org/resources/shared-decision-making-in-adpkd-collaborating-with-your-provider/) - Join us for our new webinar series—Mini Webinars! The best part? Each video is under 20 minutes. In this series, you'll learn all about ADPKD and shared decision-making. That includes the various treatment options available for ADPKD and how they can positively impact health. You'll also learn strategies for expressing your thoughts and preferences by - [Shared Decision-Making in ADPKD / Available Treatment Options](https://pkdcure.org/resources/shared-decision-making-in-adpkd-available-treatment-options/) - Join us for our new webinar series—Mini Webinars! The best part? Each video is under 20 minutes. In this series, you'll learn all about ADPKD and shared decision-making. That includes the various treatment options available for ADPKD and how they can positively impact health. You'll also learn strategies for expressing your thoughts and preferences by - [Shared Decision-Making in ADPKD / Principals of Shared Decision Making](https://pkdcure.org/resources/shared-decision-making-in-adpkd-principals-of-shared-decision-making/) - Join us for our new webinar series—Mini Webinars! The best part? Each video is under 20 minutes. In this series, you'll learn all about ADPKD and shared decision-making. That includes the various treatment options available for ADPKD and how they can positively impact health. You'll also learn strategies for expressing your thoughts and preferences by - [ADPKD Diet | What is Known and What is Safe](https://pkdcure.org/resources/adpkd-diet-what-is-known-and-what-is-safe/) - Fouad Chebib MD, Neera Dahl MD, Ph.D., Kristen Nowak Ph.D., MPH, and Michal Mrug, MD explain the findings of the review of research in "Polycystic Kidney Disease Diet: What Is Known and What Is Safe", published in the Clinical Journal of the American Society of Nephrology. Maintaining a healthy lifestyle is important to everyone - [Scientific Conference: Patient Perspective Webinar](https://pkdcure.org/resources/scientific-conference-patient-perspective-webinar/) - Join us for a unique opportunity to hear from Ron Perrone, M.D., and Anne Walsh, ADPKD patient and PKD Foundation volunteer, about the value of including the patient voice in research. Anne will share her experience navigating the 2024 American Society of Nephrology (ASN) Conference, including interacting with PKD researchers and bringing the patient perspective - [PKDCON 2023: Care Partners: How to Take Care of Yourself](https://pkdcure.org/resources/pkdcon-2023-care-partners-how-to-take-care-of-yourself/) - Presenter: Linda Herman, Meg Munits Description: Linda Herman and Meg Munits, both caregivers to family members with ADPKD and long-time volunteers supporting others on their journey, share their personal experiences as caregivers. They offer practical tips on preventing burnout, managing stress in your marriage, and caring for other children in the family who don’t have PKD—all while - [PKDCON 2023: Trem2+Cyst Associated Macrophages in PKD](https://pkdcure.org/resources/pkdcon-2023-trem2cyst-associated-macrophages-in-pkd/) - Presenter: Sarah Miller, postdoctoral research associate COE: University of Oklahoma - [Donate Life Month Spotlight: Matt Freund’s Transplant Journey with the NKR Voucher Program](https://pkdcure.org/resources/donate-life-month-spotlight-matt-freunds-transplant-journey-with-the-nkr-voucher-program/) - When kidney failure happens, dialysis or transplant become the only option. For many people with PKD, getting a transplant isn’t as simple as finding a willing donor. Matt Freund knows this firsthand. Diagnosed with PKD at age 15, Matt managed the disease for 37 years with the support of his family and the PKD Foundation - [PKD Chronicles: Ahead of the Curve: Timely Transplants for Better Kidney Health](https://pkdcure.org/resources/pkd-chronicles-ahead-of-the-curve-timely-transplants-for-better-kidney-health/) - Download Transcript In this episode, listeners will gain insights into the benefits of preemptive kidney transplants and how they can significantly improve kidney health. Learn how taking a proactive approach to transplantation can help avoid late-stage interventions and dialysis, leading to a better quality of life. We’ll discuss the critical timing of transplant conversations and - [A Patient Perspective on Evolving ADPKD Care](https://pkdcure.org/resources/patient-perspective-evolving-adpkd-care/) - Autosomal dominant polycystic kidney disease (ADPKD) is the most common heritable kidney disease, affecting 1 in 1,000 people.1 The majority of familial cases involve mutations in PKD1 (78%) or PKD2 (15%), and the remainder have responsible variants of a variety of genes such as GANAB, DNAJB11, and IFT140.2 For nephrologists, caring for patients with polycystic kidney disease (PKD) often means caring for an entire - [It's Time for Congress to Get This Done](https://pkdcure.org/resources/time-for-congress-to-get-this-done/) - It's Time for Congress to Get This Done Susan Bushnell, President & CEO, PKD Foundation March is National Kidney Month, a time when the kidney community comes to Washington ready to make the case for patients, donors, and the people who love them. This year, our ask is simple: finish the job. For over a decade, Congress has considered - [Early Diagnosis and Risk Stratification in ADPKD](https://pkdcure.org/resources/early-diagnosis-and-risk-stratification-in-adpkd/) - ADPKD is common, yet many nephrologists report uncertainty around diagnosis, risk stratification, and timing of intervention. This clinician-focused webinar provides a practical, case-based review of ADPKD care with highlights from the KDIGO 2025 Clinical Guideline. Through virtual grand rounds, real world cases will illustrate key decision points in diagnosis, monitoring, treatment initiation, and referral. Faculty - [PKD Chronicles: Beyond the Kidneys: Understanding PKD Side Effects](https://pkdcure.org/resources/pkd-chronicles-beyond-the-kidneys-understanding-pkd-side-effects/) -  Download Transcript In this episode, we explore PKD and the side effects and complications that can occur beyond the kidneys. Join us as we discuss common manifestations such as PKD belly and brain aneurysms, and how they impact patients’ lives. Through expert insights and personal stories, we highlight the challenges these complications can present - [Confidently Navigating ADPKD: Understanding the New KDIGO Guideline, ADPKD in Women & Children: Special Considerations](https://pkdcure.org/resources/confidently-navigating-adpkd-understanding-the-new-kdigo-guideline-adpkd-in-women-children-special-considerations/) - ADPKD presents unique challenges for women, pregnant individuals, and children. In our final session (Part 4 of 4), we’ll focus on pregnancy risks, hypertension, birth control considerations, and pediatric care strategies. This session will include plenty of time for questions, so you can get expert insights tailored to your concerns. Learning Objectives: Understand pregnancy risks, - [PKD Chronicles: PKD Lifestyle Essentials for Wellness](https://pkdcure.org/resources/pkd-chronicles-pkd-lifestyle-essentials-for-wellness/) -  Download Transcript In this episode, we explore essential everyday lifestyle tips designed to help those living with PKD optimize their health and well-being. From staying active and hydrated to nourishing your body with balanced meals and protecting your sleep, we break down practical, evidence‑informed strategies that support long‑term health and well‑being in a way - [PKD Foundation Strengthens National Network as 36 U.S. Clinics Redesignated for Excellence in PKD Care](https://pkdcure.org/resources/pkd-foundation-strengthens-national-network-as-36-u-s-clinics-redesignated-for-excellence-in-pkd-care/) - Three years after launching its inaugural cohort of Centers of Excellence (COEs) and Partner Clinics, the PKD Foundation continues to expand access to high-quality, specialized care for more than 500,000 people living with polycystic kidney disease (PKD) and their loved ones nationwide. In alignment with the program’s three-year renewal cycle, clinics designated as COEs and - [Manual para pacientes con ERPAD: Entender y vivir con la enfermedad renal poliquística autosómica dominante](https://pkdcure.org/resources/manual-para-pacientes-con-erpad-entender-y-vivir-con-la-enfermedad-renal-poliquistica-autosomica-dominante-2/) - Presentación El propósito de este manual es proporcionar información sobre la enfermedad renal poliquística autosómica dominante (ERPAD). Será un documento útil para aquellas personas que tienen la enfermedad, para las que tienen riesgo de tenerla debido a un progenitor afectado, así como para los familiares y amigos involucrados. No está dirigido a los pacientes con - [5 Tips for Exercising Safely in Winter with PKD](https://pkdcure.org/resources/5-tips-for-exercising-safely-in-winter-with-pkd/) - Regular exercise is a must when you have polycystic kidney disease (PKD). However, cold winter temperatures, ice, and snow can make outdoor workouts hazardous. We asked Lauren Schaffer, a physical therapist at the University of Kansas Health System (a PKD Foundation Center of Excellence), for advice. Here are her five tips for exercising safely in - [Research 101 Webinar: Driving Progress Through Clinical Trials and the ADPKD Registry](https://pkdcure.org/resources/research-101-webinar-driving-progress-through-clinical-trials-and-the-adpkd-registry/) - This session breaks down the basics of ADPKD research and why your participation matters. Explore how clinical trials work, what to expect if you participate, and how research helps bring new treatments closer to reality. Learn how the ADPKD Registry advances our understanding of PKD by connecting patients, researchers, and data to drive meaningful progress. - [PKD Chronicles: Nourishing Families: A Dive into Nutrition and Cooking](https://pkdcure.org/resources/pkd-chronicles-nourishing-families-a-dive-into-nutrition-and-cooking/) -  Download Transcript In this episode, we journey into the world of nutrition and cooking, exploring what it truly means to nourish our families well. We begin by unpacking general nutrition guidelines, drawing insights from current research on the role diet may play in managing PKD, and explaining what is both evidence-based and safe. Then, - [Breaking Kidney-Transplant News!](https://pkdcure.org/resources/breaking-kidney-transplant-news/) - A new UCLA clinical trial may allow transplant recipients to stop taking daily immunosuppressive medications, reducing side effects and improving long-term health. PKD Foundation Center of Excellence Director Heedok Han, M.D. (Columbia University Irving Medical Center) shares what this could mean for patients. "The possibility that some patients might one day need fewer immunosuppressive medications, - [PKD Chronicles: Family Planning and PKD: What to Know at Every Stage](https://pkdcure.org/resources/pkd-chronicles-family-planning-and-pkd-what-to-know-at-every-stage/) -  Download Transcript In this episode, we dive into the unique challenges and considerations individuals with PKD may face when planning a family. From pre-conception through postpartum, we’ll cover the essential information every PKD patient should know before, during, and after pregnancy. We’ll also share expert insights on managing PKD during pregnancy, navigating childbirth, and - [PKD Chronicles: Exploring Genetic Testing in PKD](https://pkdcure.org/resources/pkd-chronicles-exploring-genetic-testing-in-pkd/) -  Download Transcript Genetic testing is transforming how we understand and manage polycystic kidney disease (PKD). In our latest episode of PKD Chronicles, we dive deep into the science and significance of genetic testing for PKD patients. Discover why genetic testing is a crucial step in understanding and managing PKD. Explore how genetic insights are - [Nutritional Considerations for PKD Patients](https://pkdcure.org/resources/nutritional-considerations-for-pkd-patients-2/) - Learning objectives —Describe the basics of a healthy renal diet. —Assess diet and determine if changes need to be made to meet basic nutritional needs. Speaker Angela Cusimano, MS, RD, CSR, LD, CCTD Angela graduated from Kansas State University with her degree in Nutrition in dietetics, this was followed by completing her Master’s in Nutrition - [New Legislation Offers $5,000 Tax Credit to Living Organ Donors](https://pkdcure.org/resources/new-legislation-offers-5000-tax-credit-to-living-organ-donors/) - Published on November 1, 2023 | Today, Representatives Joe Wilson (R-SC-02) and Jerrold Nadler (D-NY-12) introduced the Living Organ Donor Tax Credit Act of 2023. If it passes, this legislation would provide a one-time, reimbursable tax credit of up to $5,000 to kidney and other living organ donors who choose to donate life-saving organs. - [Navigating Emergency Care for ARPKD](https://pkdcure.org/resources/navigating-emergency-care-for-arpkd/) - Published on December 1, 2022 | How do you know when it's time to skip waiting for a doctor's appointment and going straight to the ER? That's a decision many parents face as caregivers to children with ARPKD. There are a few things that can help you craft an emergency care plan. Let's go over - [National Polycystic Kidney Disease Awareness Day Recognized by US Senate](https://pkdcure.org/resources/national-polycystic-kidney-disease-awareness-day-recognized-by-us-senate/) - Published October 11, 2022 | Every year, PKD Awareness Day is celebrated through special ceremonies and activities to educate others about PKD and advocate for the PKD Community. With a recent resolution passing in the Senate, this day is now officially designated as National Polycystic Kidney Disease Awareness Day. National PKD Awareness Day Thanks - [Managing PKD Complications](https://pkdcure.org/resources/managing-pkd-complications/) - Published on March 31, 2022 | After a diagnosis, it's natural to have questions about polycystic kidney disease. How will it affect your daily life? Is there a treatment? How do I manage PKD complications? Finding the right healthcare team can make things easier. With the help of her nephrologist, Dr. Michael Lioudis, Sheila Bradac - [Managing PKD and Fatigue](https://pkdcure.org/resources/managing-pkd-and-fatigue/) - Published on February 22, 2022 | In living with PKD, a healthy diet and regular exercise are important aspects in managing PKD. But there's one factor that can make daily life challenging—fatigue. That overwhelming feeling of exhaustion can be frustrating and affects everyone differently. Today, Lara Macklin is sharing how she manages PKD and fatigue. - [Managing Mental Health and PKD](https://pkdcure.org/resources/managing-mental-health-and-pkd/) - Published on May 24, 2022 | May is Mental Health Awareness Month. With chronic illnesses, like ARPKD and ADPKD, mental health is an important factor of your overall care plan. Whether you're a patient with PKD, caregiver, or family member, taking charge of your mental health is empowering. To set you up with the right - [Losing a Child with ARPKD](https://pkdcure.org/resources/losing-a-child-with-arpkd/) - Published on October 15, 2022 | Today is Pregnancy and Infant Loss Remembrance Day. Every October 15, we honor we honor lost pregnancies and infant deaths which includes miscarriages, still births, and of course, ARPKD. A rare genetic disorder, autosomal recessive polycystic kidney disease (ARPKD) occurs in approximately 1 in 25,000 children. Tragically, it can - [KETO-PKD Study](https://pkdcure.org/resources/keto-pkd-study-2/) - How's enrollment going in the study (started in October 2020) and what's the evidence behind this intervention? Learning objectives Understand why nutrition research needs pilot/feasibility studies before larger clinical trials. Learn what do we know about the KETO diet as an intervention in animal PKD vs. human PKD. Increase knowledge of PKDF’s funded research programs - [Introduction to PKD: What should I know about PKD?](https://pkdcure.org/resources/introduction-to-pkd-what-should-i-know-about-pkd-2/) - Learning objectives Describe the different forms of PKD, how PKD develops, and the genetic reasons it happens. Describe PKD complications and the treatments used to control symptoms, slow the growth of cysts, and help with kidney function. Discuss lifestyle choices and options that may slow PKD symptoms. Speakers Franz Winklhofer, MD Dr. Franz Winklhofer is - [How You Can Join the Advocacy Champions Network](https://pkdcure.org/resources/how-you-can-join-the-advocacy-champions-network/) - Published on September 14, 2023 | Aside from funding research, one of the best ways to drive change in the PKD community is through advocacy. One way you can take part in PKD advocacy is by joining the Advocacy Champions Network (ACN). Applications are now open for the 2023-2024 ACN program year! Join other PKD - [How Fall Kidney Meetings Support PKD Research and Clinical Trials](https://pkdcure.org/resources/how-fall-kidney-meetings-support-pkd-research-and-clinical-trials/) - Throughout September, PKD Foundation leadership joined experts, advocates, academics, and pharmaceutical companies in Washington, D.C., for a variety of meetings to discuss PKD research. Together, they discussed everything from the state of federal research funding to strategies for accelerating PKD clinical trials. Critical Path Institute Global Impact Conference As our partner in advancing polycystic - [Healthy Diet Tips for ARPKD Parents](https://pkdcure.org/resources/healthy-diet-tips-for-arpkd-parents/) - Published on July 7, 2022 | Making sure your child consumes a healthy diet is an important task for all parents, but especially when your child has PKD. So, what can parents do to keep a healthy diet for their child with ARPKD? “With any complex medical diagnosis, we want to make sure the children - [ARPKD EL-PFDD 2023](https://pkdcure.org/resources/arpkd-el-pfdd-2023-2/) - What to Expect from the ARPKD EL-PFDD Meeting On August 29, 2023 the PKD Foundation will hold its first ever Externally Led Patient-focused Drug Development (EL-PFDD) Meeting on Autosomal Recessive PKD (ARPKD) and Congenital Hepatic Fibrosis (CHF). Should you attend the meeting? What should you expect? Get answers to these questions and more by attending - [Diet Planning for Both PKD and Diabetes](https://pkdcure.org/resources/diet-planning-for-both-pkd-and-diabetes/) - Published on August 2, 2022 | Planning meals and snacks requires extra effort when you have PKD. But if you have both PKD and diabetes, the process can be even more challenging. While a PKD diet and a diabetes diet overlap in many ways, the recommendations for each do conflict sometimes. This can create a - [Cooking Well: Delicious, everyday recipes for the PKD family](https://pkdcure.org/resources/cooking-well-delicious-everyday-recipes-for-the-pkd-family-2/) - About Author Jacob Taylor, Ph.D., RD, LD writes that “this cookbook provides those with PKD, who are looking to play an active role in their disease, a helpful hand in understanding how to change their diet, with recipes to suit.” Download today. Learn more PKD-friendly recipes PKD nutrition Webinar: Nutritional Considerations for PKD Patients - [Confidently Navigating ADPKD: Understanding the New KDIGO Guideline, Decoding ADPKD: Managing ADPKD - Treatments, Lifestyle, & Living Well](https://pkdcure.org/resources/confidently-navigating-adpkd-understanding-the-new-kdigo-guideline-decoding-adpkd-managing-adpkd-treatments-lifestyle-living-well/) - ADPKD affects more than just the kidneys. In part three of our four-part series, we’ll explore how ADPKD impacts the heart, liver, bones, and metabolic health. Learning Objectives: Heart and vascular risks in ADPKD, including brain aneurysms. Polycystic liver disease (PLD) and how to manage symptoms. The impact of ADPKD on bone health, metabolism, and - [Confidently Navigating ADPKD: Understanding the New KDIGO Guideline, Decoding ADPKD: Diagnosis, Prognosis, & Genetics](https://pkdcure.org/resources/confidently-navigating-adpkd-understanding-the-new-kdigo-guidelines-decoding-adpkd-diagnosis-prognosis-genetics/) - This session will explore how ADPKD is diagnosed, what factors influence disease progression, and the role of genetics in understanding and managing ADPKD. Learning Objectives: Understand how ADPKD is diagnosed and what to monitor. Learn about factors that impact disease severity & prognosis. Explore the genetics of ADPKD (PKD1 vs. PKD2) and when genetic testing - [Confidently Navigating ADPKD: Understanding the New KDIGO Guideline, Decoding ADPKD: Beyond the Kidneys - The Whole-Body Impact of ADPKD](https://pkdcure.org/resources/confidently-navigating-adpkd-understanding-the-new-kdigo-guideline-decoding-adpkd-beyond-the-kidneys-the-whole-body-impact-of-adpkd/) -  ADPKD affects more than just the kidneys. In part three of our four-part series, we’ll explore how ADPKD impacts the heart, liver, bones, and metabolic health. Learning Objectives: Heart and vascular risks in ADPKD, including brain aneurysms. Polycystic liver disease (PLD) and how to manage symptoms. The impact of ADPKD on bone health, metabolism, - [Caregivers: Recognizing When Day-to-Day Stress Becomes a Health Issue](https://pkdcure.org/resources/caregivers-recognizing-when-day-to-day-stress-becomes-a-health-issue-2/) - About How do you recognize when day-to-day stress becomes a health issue when you are caring for someone with PKD? Many caregivers experience exhaustion and caregiving can be emotionally, mentally, and financially draining. This session will help you identify if you are experiencing depression, anxiety, or even PTSD, and when should you seek professional help. - [ARPKD Outside the Kidneys: Aneurysms and Liver Disease](https://pkdcure.org/resources/arpkd-outside-the-kidneys-aneurysms-and-liver-disease-2/) - Dr. Erum Hartung updates on her "Aneurysms in ARPKD" study (begun August 2021): current enrollment, what she hopes to learn. Learning objectives Understand the current knowledge of aneurysms and liver disease in ARPKD patients. Learn what Dr. Hartung’s research studies are looking to learn and how to sign up your child to participate. Increase knowledge - [Advocating on Virtual Advocacy Day with Tamara Walker](https://pkdcure.org/resources/advocating-on-virtual-advocacy-day-with-tamara-walker/) - Published on March 30, 2023 | In order to change the future of PKD, it takes more than research. Advocacy plays an important part, too. Our Advocacy Champions Network connects PKD advocates to their local legislators, helping further PKD-centered legislation. In recent years, PKD legislation included the Living Donor Protection Act, Orphan Drug Tax Credit, - [ADPKD Weight Loss Study Findings](https://pkdcure.org/resources/adpkd-weight-loss-study-findings/) - Published on January 25, 2022 | Can weight loss play a part in slowing autosomal dominant polycystic kidney disease progression? The University of Colorado, Denver recently released findings from a research study focused on weight loss and cystic disease progression in ADPKD. Funded in part by a 2020 PKDF Investigator Grant to Kristen Nowak, Ph.D., - [ACN Spotlight: Lainie Esquivel](https://pkdcure.org/resources/acn-spotlight-lainie-esquivel/) - Published on June 7, 2022 | In order to advocate for our community, we formed the Advocacy Champions Network (ACN). The ACN connects advocates to their local legislators, helping further PKD-centered legislation. Each member has their own unique path to advocacy. Continuing our ACN spotlight series, today we're highlighting ACN member Lainie Esquivel. What does - [ACN Spotlight: Alix Piccirilli](https://pkdcure.org/resources/acn-spotlight-alix-piccirilli/) - Published on April 5, 2022 | Launched in 2020, the Advocacy Champions Network (ACN) is an exclusive community of patients, family members, and clinicians dedicated to improving the lives of people living with PKD. The inaugural ACN class consisted of 36 members from 22 states. Since then, the ACN helped connect advocates to their local - [5 Reasons to Make Your PKD Legacy Estate Plan](https://pkdcure.org/resources/5-reasons-to-make-your-pkd-legacy-estate-plan/) - Published on October 20, 2022 | Have you ever thought about your PKD legacy? This week, we're celebrating National Estate Planning Awareness Week. One way to create a PKD legacy is by including the PKD Foundation in your estate plan. Estate Plan Basics So, what's an estate plan? It's an easy way to ensure - [5 Powerful Updates to the ADPKD Registry](https://pkdcure.org/resources/5-powerful-updates-to-the-adpkd-registry/) - Published on August 3, 2023 | In 2019, the PKD Foundation launched the ADPKD Registry, the first national patient-centered registry for people with autosomal dominant polycystic kidney disease. Four years later, the Registry has successfully opened much-needed avenues for discussion and data exchange between patients and researchers. Last week, the Foundation launched an updated version - [5 Important Kidney Topics for National Donor Day](https://pkdcure.org/resources/5-important-kidney-topics-for-national-donor-day/) - Published on February 14, 2023 | Since 1998, February 14 has been observed as National Donor Day. Beyond sending valentines, this day is dedicated to spreading awareness and education about organ, eye, and tissue donation. Donation an organ or tissue is one of the most generous acts a person can do. According to the United - [PKD Chronicles: Measuring Progress: Understanding TKV in PKD Management](https://pkdcure.org/resources/measuring-progress-understanding-tkv-in-pkd-management/) - Download Transcript What’s total kidney volume (TKV) and why is it a big deal for people with PKD? In this episode, we’re breaking down what total kidney volume is and its role in tracking the progression of PKD. Discover: How TKV is measured What it signifies for disease progression Its implications for treatment decisions Guidance - [PKD Chronicles: What You Should Know About Tolvaptan](https://pkdcure.org/resources/pkd-chronicles-what-you-should-know-about-tolvaptan/) -  Download Transcript Unravel the story behind tolvaptan, a medication revolutionizing the treatment landscape for polycystic kidney disease (PKD), on PKD Chronicles. In our latest episode, we’ll: Give a brief of the history of this drug. Explain how tolvaptan works and how it specifically targets the underlying causes of PKD Explore the nuances of using - [PKD Chronicles: Understanding Clinical Trials and Registries in PKD Research](https://pkdcure.org/resources/pkd-chronicles-understanding-clinical-trials-and-registries-in-pkd-research/) -  Download Transcript In this episode of PKD Chronicles, we’re exploring how participation fuels progress in research and treatment development. Nephrologist and PKD researcher, Neera Dahl, M.D., joins us to help you discover: Why clinical trials and registries are critical to advancing PKD research Common myths and concerns about participation How informed decisions can empower - [PKDCON 2023: ADPKD and Pregnancy Considerations](https://pkdcure.org/resources/pkdcon-2023-adpkd-and-pregnancy-considerations/) - Presenter: Dallas Reed, M.D. COE: Tufts Description: Dallas Reed, M.D., shares important information about ADPKD and what it means for pregnancy. This talk covers key topics like managing high blood pressure and preeclampsia, what to expect during pregnancy and delivery, kidney health, urinary tract concerns, and how your baby will be monitored. You’ll also learn about planning ahead - [PKDCON 2023: You Have Been Diagnosed with PKD, Now What?](https://pkdcure.org/resources/pkdcon-2023-you-have-been-diagnosed-with-pkd-now-what/) - Presenters: Osama Amro, M.D., Alethea Ritchie, R.N. COE: Swedish Description: In this session, Osama Amro, M.D., and Patient Navigator Alethea Ritchie, R.N., talk about what it’s like being newly diagnosed with ADPKD. They discuss the emotional impact of early-stage disease, the nutrition challenges that can come with it, and how to start building a supportive health care team - [PKDCON 2023: PKD Manifestations 'Outside' of the Kidneys](https://pkdcure.org/resources/pkdcon-2023-pkd-manifestations-outside-of-the-kidneys/) - Presenter: Ashima Gulati, M.D., Ph.D. COE: Children's National Description: This session focuses on how ARPKD (autosomal recessive polycystic kidney disease) can affect children beyond their kidneys. Learn what to watch for and how to manage common complications, including liver involvement, high blood pressure, and fluid needs. Ashima Gulati, M.D., Ph.D., covers what ARPKD may look like before birth, - [PKDCON 2023: Transplant 101](https://pkdcure.org/resources/pkdcon-2023-transplant-101/) - Presenter: Sixto Giusti, M.D. COE: Colorado University School of Medicine Description: This session walks you through the kidney transplant journey—from the initial referral to life after surgery. You'll learn about the different members of the transplant team who guide and support you along the way. Sixto Giusti, M.D., will also explain your transplant options and help clear up - [PKDCON 2023: PKD Screening: Tools, Timeline, Impact](https://pkdcure.org/resources/pkdcon-2023-pkd-screening-tools-timeline-impact/) - Presenter: Neera Dahl, M.D., Ph.D. COE: Mayo Rochester, Emory Description: Neera Dahl, M.D., explains what to expect during your first visit with a PKD specialist and how you and your doctor can work together to manage your care. She talks about how PKD can progress over time, the role of both genetics and environmental factors, and why tracking - [PKDCON 2023: Nutrition and PKD](https://pkdcure.org/resources/pkdcon-2023-nutrition-and-pkd/) - Presenter: Haewook Han Ph.D., R.D., LDN, FNKF COE: Tufts Description: Haewook Han Ph.D., R.D., LDN, FNKF, talks about the role of nutrition in managing PKD. She covers what can cause chronic kidney disease, how much water you should drink, nutrition goals for people with PKD, tips for maintaining a healthy weight, how to build a balanced meal plan, - [PKDCON 2023: Use of Exosomal Polycystin-1 (PC1) Level to Diagnose and Monitor PKD](https://pkdcure.org/resources/pkdcon-2023-use-of-exosomal-polycystin-1-pc1-level-to-diagnose-and-monitor-pkd/) - Presenter: Christopher Ward, MBChB, Ph.D. COE: University of Kansas - [PKDCON 2023: PKD Management after Kidney Transplant](https://pkdcure.org/resources/pkdcon-2023-pkd-management-after-kidney-transplant/) - Presenter: Jeffrey Klein, M.D. COE: University of Kansas Description: Jeffrey Klein, M.D., helps you understand how to take care of your health after a kidney transplant. He discusses important topics like screening for brain aneurysms, possible liver issues, managing pain, dealing with digestive problems, and staying connected with your PKD care team from before your transplant. - [PKDCON 2023: PKD and Nutrition Post Transplant](https://pkdcure.org/resources/pkdcon-2023-pkd-and-nutrition-post-transplant/) -  Presenter: Melanie Betz M.S., R.D., CSR, CSG, FAND Description: Melanie Betz, M.S., R.D., CSR, FNKF, FAND, shares helpful tips for a healthy recovery after a kidney transplant, including which foods to avoid and how to support your healing through nutrition. - [PKDCON 2023: How to Navigate the Emotions of Having a Child Diagnosed with PKD](https://pkdcure.org/resources/pkdcon-2023-how-to-navigate-the-emotions-of-having-a-child-diagnosed-with-pkd/) - Presenter: Alix Piccirili and Betsy Pruzinsky, LPC Description: In this video, Alix Piccirilli and Betsy Pruzinsky, LPC, explore the emotional journey that comes with living with PKD. They discuss what to expect during different stages—from prenatal to older childhood—and offer practical tips to reduce anxiety and improve quality of life. The session also includes insights for siblings - [PKDCON 2023: How to Live Your Best Life on Dialysis](https://pkdcure.org/resources/pkdcon-2023-how-to-live-your-best-life-on-dialysis/) - Presenter: Kerri McGreal, M.D. COE: University of Kansas Description: Kerri McGreal, M.D., breaks down the essentials of dialysis—what it is, the treatment options, possible complications, and practical tips for maintaining a healthy lifestyle while on dialysis. Whether you're just starting treatment or seeking ways to improve your day-to-day experience, this video offers straightforward information and encouragement. - [PKDCON 2023: Dietary Interventions and Metabolism for Polycystic Kidney Disease | Part 2](https://pkdcure.org/resources/pkdcon-2023-dietary-interventions-and-metabolism-for-polycystic-kidney-disease-part-2/) - Presenter: Charles Edelstein, M.D., Ph.D. / Cortney Steele, Ph.D. COE: University of Colorado Description: Discover insights into diet, metabolism, and their impact on polycystic kidney disease (PKD). Charles Edelstein, Ph.D., will share research on how increasing uric acid levels—using a specific medication—affects disease progression in PKD animal models. Cortney Steele, Ph.D., will explain how she used advanced computer - [PKDCON 2023: Dietary Interventions and Metabolism for Polycystic Kidney Disease | Part 1](https://pkdcure.org/resources/pkdcon-2023-dietary-interventions-and-metabolism-for-polycystic-kidney-disease-part-1/) - Presenters: Kotdaji Ha Ph.D., Sadrija Cukoski, Ph.D. Description: Hear about research on diet and metabolism in polycystic kidney disease (PKD). Kotdaji Ha, Ph.D., will share insights from her research on how the polycystin protein complex is regulated in the body—important for understanding how PKD develops. Sadrija Cukoski, Ph.D., will discuss findings from the KETO-ADPKD trial in - [PKDCON 2023: Nephrectomy Surgery: Understanding the Risks and Benefits](https://pkdcure.org/resources/pkdcon-2023-nephrectomy-surgery-understanding-the-risks-and-benefits/) - Presenters: Terry Watnick, MD, Amit Gupta, M.D. COE: University of MD Description: Terry Watnick, M.D., and Amit Gupta, M.D., provide an overview of native nephrectomy (kidney removal). They’ll explain the different types of nephrectomies, when and why this surgery might be needed, how doctors decide on timing, and the various surgical options available. This session will help - [PKDCON 2023: What to Expect After Transplant Surgery](https://pkdcure.org/resources/pkdcon-2023-what-to-expect-after-transplant-surgery/) -  Presenter: Patrick Dean, M.D. COE: Mayo Rochester, Emory Description: Patrick Dean, M.D., helps patients and caregivers understand what recovery looks like after a kidney transplant. He’ll walk through what to expect in the weeks and months after surgery, including tips on managing medications, taking care of the surgical site, and the role of physical therapy. The session - [PKDCON 2023: Understanding the Forecast: How Well Will I Be Doing?](https://pkdcure.org/resources/pkdcon-2023-understanding-the-forecast-how-well-will-i-be-doing/) - Presenter: Fouad Chebib, M.D. COE: Mayo Jacksonville Description: Fouad Chebib, M.D., guides patients on what to expect with polycystic kidney disease (PKD). He’ll talk about how doctors estimate disease progression, what total kidney volume means, why PKD can look different even among family members, and what resources are available to help you manage the condition and protect your - [PKDCON 2023: Long - term Complications of Kidney Transplants](https://pkdcure.org/resources/pkdcon-2023-long-term-complications-of-kidney-transplants/) - Presenter: Naim Issa, M.D. COE: Mayo Rochester Description: Naim Issa, M.D., offers guidance on life after a kidney transplant. He’ll walk you through what to expect during recovery, how to manage common challenges, and ways to stay healthy with a weakened immune system. This session will help you feel more prepared and confident as you navigate life post-transplant. - [PKDCON 2023: Transitioning to Adult Care in ADPKD and ARPKD](https://pkdcure.org/resources/pkdcon-2023-transitioning-to-adult-care-in-adpkd-and-arpkd/) - Presenters: Erum Hartung, M.D., MTR, Shawna Webb COE: Children's Hospital of Philadelphia Description: Erum Hartung, M.D., and ARPKD patient, Shawna Webb, share practical advice for families navigating the shift from pediatric to adult care. They’ll offer tips on how caregivers can help children build confidence, speak up for themselves, and take an active role in - [PKDCON 2023: ARPKD and Cystic Diseases in Children](https://pkdcure.org/resources/pkdcon-2023-arpkd-and-cystic-diseases-in-children/) -  Presenters:Sara Howden, Ph.D., Feng Qian, Ph.D., Christopher Banek, Ph.D. COE: Australia Description: Learn about exciting research focused on ARPKD (autosomal recessive polycystic kidney disease) and other cystic kidney diseases in children. Sara Howden, Ph.D., will share updates from her research using lab-grown cells to better understand ARPKD, a project supported by the PKD Foundation and PKD - [PKDCON 2023: What You Should Know About Living Kidney Donation](https://pkdcure.org/resources/pkdcon-2023-what-you-should-know-about-living-kidney-donation/) - Presenter: Sixto Giusti, M.D. Description: Sixto Giusti, M.D., provides an understanding of the kidney donation process. Participants will gain insights into the emotional and physical aspects of the process and the supports available for recipients and donors. The session will also delve into the criteria required to be a suitable donor, including medical and psychological - [PKDCON 2023: Your Child Has Been Diagnosed with PKD - Now What?](https://pkdcure.org/resources/pkdcon-2023-your-child-has-been-diagnosed-with-pkd-now-what/) - Presenter: Lisa Guay-Woodford, M.D, COE: Children's Hospital of Philadelphia Description: Lisa Guay-Woodford, M.D., offers a clear and compassionate overview of the basics of polycystic kidney disease (PKD). She talks about how PKD can affect children emotionally, what to do after a diagnosis, why nutrition matters, and how to build a strong healthcare team to support - [PKD Chronicles: Navigating Life with Polycystic Kidney Disease](https://pkdcure.org/resources/pkd-chronicles-navigating-life-with-polycystic-kidney-disease/) - Download Transcript This episode speaks directly to young people living with PKD, addressing the profound emotional challenges that come with the territory. From dealing with a new diagnosis to navigating feelings of loss and uncertainty, we tackle the mental health aspects of PKD head-on. Join us for honest conversations about grief, resilience, and the mental - [PKD Chronicles: Empowerment, support, and connection while navigating PKD - Part 2](https://pkdcure.org/resources/pkd-chronicles-empowerment-support-and-connection-while-navigating-pkd-part-2/) - Download Transcript In this episode, we continue our conversation with Lisa Smallwood Belk and Alix Piccirilli, on how PKD has impacted their lives and families. In part two, Lisa and Alix dive into practical, actionable ways people with PKD and their loved ones can make a difference, including: Connecting with the PKD community online Participating - [PKD Chronicles: Empowerment, support, and connection while navigating PKD - Part I](https://pkdcure.org/resources/pkd-chronicles-empowerment-support-and-connection-while-navigating-pkd-part-i/) - Download Transcript From navigating complex medical decisions to managing emotional ups and downs, PKD can be overwhelming; but you don’t have to face it alone. In this episode, we explore how community, communication, and self-advocacy can significantly help people with PKD and their loved ones. In this episode, we’re fortunate to have two guests, Lisa - [The Best Ways to Prevent UTIs](https://pkdcure.org/resources/the-best-ways-to-prevent-utis/) - Published on October 5, 2021 | Anyone can get a urinary tract infection (UTI), but having PKD can increase your risk of UTIs. One reason is that kidney cysts are prone to infection, allowing bacteria to build up and affect the urinary tract. Symptoms of UTIs include pain or a burning sensation when you urinate - [PKD in Children](https://pkdcure.org/resources/pkd-in-children/) - About The PKD Foundation has invested over $2 million since 2006 for research, support, education and awareness for ARPKD, ADPKD in children, and congenital hepatic fibrosis (CHF), a disease closely associated with ARPKD. This info sheet provides helpful information for parents of children with PKD, caregivers, and physicians. - [Peer Ambassadors Raising Awareness and Inspiring Hope](https://pkdcure.org/resources/peer-ambassadors-raising-awareness-and-inspiring-hope/) - Published on November 1, 2022 | This year, the PKD Foundation created the Peer Ambassadors program. Established to build new bridges between the Foundation and previously underserved communities. Recently, two Peer Ambassadors, Tatiana Mangwi and Alyssia Gomez, attended events spreading the word about PKD. Each joining for their own reason, their hard work is connecting - [My Living Donor Journey: Craig Gile](https://pkdcure.org/resources/my-living-donor-journey-craig-gile/) - Published on April 26, 2022 | For 30 years, Klee Kleber and Craig Gile have been friends. Like the estimated 600,000 adults in the United States, Klee has autosomal dominant polycystic kidney disease (ADPKD). And Craig's remained a steadfast friend on his journey with PKD. Together, they've even walked side by side at the Walk - [Securing the U.S. Organ Procurement and Transplantation Network Act Becomes Law](https://pkdcure.org/resources/securing-the-u-s-organ-procurement-and-transplantation-network-act-becomes-law/) - Published on October 3, 2023 | On Friday, September 22, 2023, President Biden signed the Securing the U.S. Organ Procurement and Transplantation Network Act (P.L. 118-140) into law. Through this law, we'll modernize and improve the Organ Procurement and Transplantation Network (OPTN). The PKD Foundation was among several kidney care stakeholder organizations that endorsed - [Running a Marathon for PKD](https://pkdcure.org/resources/running-a-marathon-for-pkd/) - Published on March 30, 2021 | What comes to mind when you think of ways to raise awareness of PKD? Attending the Walk for PKD, posting kidney facts on social media? As the spring weather settles in, there's another active way to support awareness—running a marathon for PKD. And Heather Gillis is a veteran at - [Xenotransplantation: Animal to Human Transplants](https://pkdcure.org/resources/xenotransplantation-animal-to-human-transplants/) - Published on May 17, 2022 | Each year, tens of thousands of patients need organ transplants. However, the supply of available organs is much smaller than the demand. In order to combat the tremendous shortage of organs available for transplantation, researchers are working on a non-human solution. Recently, there’s been progress by generating pigs suitable - [Spring PKD Advocacy Days Elevate Community's Needs](https://pkdcure.org/resources/spring-pkd-advocacy-days-elevate-communitys-needs/) - Published on May 8, 2024 | This spring, the PKD Foundation and local advocates brought the needs of the polycystic kidney disease (PKD) community to Capitol Hill. Through two events, these passionate advocates elevated PKD-centric policies to Congress and called for vital research funding to improve the lives of people with PKD. National Kidney Month - [Why Did the FALCON Clinical Trial End?](https://pkdcure.org/resources/why-did-the-falcon-clinical-trial-end/) - Published on May 23, 2023 | On May 10, the ongoing FALCON clinical trial was terminated early. FALCON is a Phase 3 clinical study evaluating the effectiveness and safety of bardoxolone methyl (an oral investigational drug) in patients with ADPKD. The study aimed for 850 participants to be studied for two years. But why was - [What It's Like Being a Family Caregiver](https://pkdcure.org/resources/what-its-like-being-a-family-caregiver/) - Published on November 14, 2022 | In November, we celebrate National Family Caregivers Month. Family caregivers are a crucial pillar of our healthcare system, proving necessary care to their loved ones. Jennifer Visda knows firsthand what life is like as a family caregiver. As she cares for her husband, Rob, who has PKD, she's seen - [Walk for PKD Ambassador Spotlight: Larianne Austin](https://pkdcure.org/resources/walk-for-pkd-ambassador-spotlight-larianne-austin/) - Published on August 9, 2022 | The 2022 Walk for PKD is nearly here! As we countdown the days until our first Walk events, we're highlighting another member of our community who makes these events possible. Helping lead the Sacramento Walk for PKD, is Walk Ambassador Larianne Austin. What brought you to the PKD - [Walk for PKD Ambassador Spotlight: Felicia Berenson-Reinhardt](https://pkdcure.org/resources/walk-for-pkd-ambassador-spotlight-felicia-berenson-reinhardt/) - Published on July 14, 2022 | With the Walk for PKD being our biggest awareness event, Walk for PKD Ambassadors are an essential role. They’re responsible for planning and executing their local Walk for PKD with support from PKD Foundation staff. This volunteer role raises important financial support and plans an event that brings their - [Understanding Trials on Ketogenic Diet Interventions for PKD](https://pkdcure.org/resources/understanding-trials-on-ketogenic-diet-interventions-for-pkd/) - Published on November 20, 2023 | Each year, the PKD Foundation funds research grants and fellowships to increase understanding of the genetic and pathological processes involved in PKD and to accelerate the development of potential therapies for PKD patients. In 2020, that included Roman-Ulrich Müller, M.D., a researcher investigating the ketogenic diet and PKD. In 2019, - [Understanding Robotic Bilateral Nephrectomy](https://pkdcure.org/resources/understanding-robotic-bilateral-nephrectomy/) - Published on June 18, 2024 | Patients with polycystic kidney disease (PKD), may know the surgical procedure, bilateral nephrectomy. A surgical procedure to remove both kidneys. But have you heard of robotic bilateral nephrectomy? Traditionally, a bilateral nephrectomy is done through open surgery or laparoscopy. However, significant advancements in robotic bilateral nephrectomy show potential benefits, - [Should You Enroll Your Child in a Clinical Study?](https://pkdcure.org/resources/should-you-enroll-your-child-in-a-clinical-study/) - Published on September 13, 2022 | At the age of 5, Ian Jones (name changed for privacy) was diagnosed with ARPKD. During a routine trip to his pediatrician, his mother mentioned that Ian was having a lot of trouble staying dry at night. Tests revealed that he had cysts on his kidneys. There was no - [RideForPKD: Part I](https://pkdcure.org/resources/rideforpkd-part-i/) - Published on April 19, 2022 | When it comes to polycystic kidney disease, we all want to feel like we're making a difference. Some of join clinical trials, others volunteer with the Walk for PKD or serve as peer mentors. But Glenn Frommer had something big in mind. A PKD patient, advocate, and PKDF volunteer, - [RideForPKD: Part 2](https://pkdcure.org/resources/rideforpkd-part-2/) - Published on June 21, 2022 | A PKD patient, advocate, and PKDF volunteer, Glenn Frommer organized the RideForPKD to raise $500,000 for PKD research. On May 1, Glenn Frommer kicked off his journey across the country. And after nearly two months on the road, we're checking in with him to hear the highlights and challenges - [Research Spotlight: Laura Onuchic, M.D.](https://pkdcure.org/resources/research-spotlight-laura-onuchic-m-d/) - Published on June 28, 2022 | Laura Onuchic, M.D., Yale School of Medicine How did you first get involved in PKD research? Laura Onuchic: The fight against PKD has been a part of my life for as long as I can remember. Both my parents are incredible medical doctors in my home-country, Brazil. More - [Research Spotlight: Harold Aukema, Ph.D.](https://pkdcure.org/resources/research-spotlight-harold-aukema-ph-d/) - Published on July 19, 2022 | Harold Aukema, Ph.D., University of Manitoba (Co-Funded by PKD Foundation of Canada) How did you first get involved in PKD research? Harold Aukema: When I was a graduate student, our lab acquired one of the first models of PKD and I was excited about the potential of diet - [Preparing for a Kidney Transplant](https://pkdcure.org/resources/preparing-for-a-kidney-transplant/) - Published on January 17, 2023 | If you have PKD, your nephrology team may one day recommend that you be evaluated for a kidney transplant. Here’s what New Orleans nephrologists Zohreh Soltani, M.D., of Ochsner Medical Center, and Siddhartha Bajracharya, M.D., of University Medical Center, recommend you do beforehand to get the best possible outcome. - [Planning an Emergency PKD Diet on World Kidney Day](https://pkdcure.org/resources/planning-an-emergency-pkd-diet-on-world-kidney-day/) - Published on March 9, 2023 | Today is World Kidney Day. Each year, the World Kidney Day Joint Steering Committee selects a topic to highlight awareness of kidney health around the world. For 2023, they chose the topic, “preparing for the unexpected, supporting the vulnerable." Their aim is to raise awareness of the impact disastrous events - [PKD-Friendly Summertime Salad](https://pkdcure.org/resources/pkd-friendly-summertime-salad/) - Published on July 26, 2022 | Summer is in full swing and it seems like all over the country people are experiencing heat waves. How about a refreshing salad to beat the heat? This recipe for a PKD-friendly summertime salad from our cookbook, Cooking Well, is low in sodium, low in protein, and reduces acid! - [PKD-Friendly Recipe: Creamy Carrot Thyme Soup](https://pkdcure.org/resources/pkd-friendly-recipe-creamy-carrot-thyme-soup/) - Published on December 08, 2022 | As the weather grows colder and we settle into the holiday season, it's time for soup. This recipe for a creamy carrot and thyme soup from our cookbook, Cooking Well, is low in sodium, low in protein, high in fluids, and reduces acid! Whether it's for a holiday party - [PKD-Friendly Recipe: 7 Layer Dip](https://pkdcure.org/resources/pkd-friendly-recipe-7-layer-dip/) - Published on September 27, 2022 | The heat is fading and fall activities are popping up. Whether it's for a football game, movie night, or fall potluck, we can all use another PKD-friendly snack option. This recipe for a seven-layer dip from our cookbook, Cooking Well, is low in sodium, low in protein, and reduces - [PKD Genetic Testing: What to Know](https://pkdcure.org/resources/pkd-genetic-testing-what-to-know/) - Published on June 14, 2022 | With polycystic kidney disease, there is a 50% chance of passing the disease to children. Due to the high chance of passing PKD to future generations, many have questions about genetic testing. To better understand the role of genetic testing in people with ADPKD, we sought advice from an - [PKD and Common GI Issues](https://pkdcure.org/resources/pkd-and-common-gi-issues/) - Published on January 11, 2021 | When you have PKD, your kidneys aren’t the only organs involved. Many people also have issues with their digestive systems. These are just a few links between PKD and common GI issues. Liver Cysts About 80% of people with PKD develop liver cysts, says Seth Goldberg, M.D., associate ## Centers of Excellence - [Comprehensive Kidney Care Center at Rady Children's](https://pkdcure.org/centers/comprehensive-kidney-care-center-at-rady-childrens/) - Rady Children’s Comprehensive Kidney Care Center treats children and young adults up to 21 years of age with kidney disease. We offer a full array of services along the age continuum, from prenatal counseling and initial diagnosis to renal replacement therapy, to the transition to adult nephrology services. Providers treat a variety of genetic causes - [Emory University Hospital](https://pkdcure.org/centers/the-emory-clinic/) - Emory Clinic at Emory University has been involved in all major studies that changed the care of PKD patients. The clinic has seen more than 2000 patients and offers all aspects of care for PKD patients, ranging from Nephrology care, urology services, interventional radiology center, Pain management, nutritional services, Hepatology services, kidney, hemodialysis, peritoneal dialysis, - [Nephrology Associates, PA (DE)](https://pkdcure.org/centers/nephrology-associates-pa-de/) - Nephrology associates is the largest and most comprehensive nephrology practice operating across the entire state of Delaware. Our group comprises a network of skilled nephrologists, and healthcare professionals, providing top-notch kidney care to patients in every corner of the state. With clinics strategically located throughout the state, we ensure that patients have easy access to - [Columbia University Medical Center](https://pkdcure.org/centers/columbia-university-medical-center-nephrology/) - Our mission is to improve the health of patients with kidney disease and find a cure. Our faculty members are world-renowned and our division is consistently among the highest-ranked programs nationally. We offer comprehensive clinical services, cutting edge research and innovative training programs. Our nephrology division has many unique programs including our Precision Medicine Initiative, - [University of Vermont](https://pkdcure.org/centers/university-of-vermont/) - University Clinic with 10 providers, 3 nurses, 1 dietitian, 2 research coordinators, co-located with renal transplant service (2 surgeons, 2 transplant nephrologists). - [Dallas Nephrology Associates](https://pkdcure.org/centers/dallas-nephrology-associates/) - Dallas Nephrology Associates (DNA) is a national leader in creating person-centered value-based care in Nephrology, with a focus on innovation and patient choice. For over 50 years, DNA has been a trusted source of information and education resulting in quality kidney care. Our healthcare team, consisting of over 100 physicians and 25 advanced practitioners, play - [University of Chicago](https://pkdcure.org/centers/uchicago-medicine-duchossois-center-or-advanced-medicine/) - The PKD Center resides within the University of Chicago and University of Chicago Medicine (UCM) and is a national and international referral clinic for patients with autosomal dominant polycystic kidney disease or ADPKD. The UCM clinic has been in existence for more than seven years and provides specialized services to patients with ADPKD with access - [University of Texas Southwestern Medical Center](https://pkdcure.org/centers/university-of-texas-southwestern-medical-center/) - A comprehensive PKD Clinic which offers MRI for TKV assessment, a broad range of subspecialists, access to nutrition consultation, transplant/dialysis options, and clinical trials. Go to Website - [Tufts Medical Center](https://pkdcure.org/centers/pkd-center-at-tufts-medical-center/) - At the Center for Polycystic Kidney Disease at Tufts Medical Center, our goal is to give patients a lifetime of individualized care. Our team treats patients with both autosomal dominant polycystic kidney disease (ADPKD) and the less common autosomal recessive polycystic kidney disease (ARPKD). Drs. Gordon, Perrone and Miskulin work closely with our colleagues to - [South Texas Renal Care Group](https://pkdcure.org/centers/south-texas-renal-care-group/) - Nephrology, Vascular Surgery, Imaging Center, ASC/OBL for HD access placement and care Connect with your local San Antonio PKD Community Here Go to Website - [University of Texas Health San Antonio](https://pkdcure.org/centers/university-of-texas-health-san-antonio/) - The University of Texas Health Science Center at San Antonio, also known as UT Health San Antonio, is a leading academic health center with a mission to make lives better through excellence in advanced academics, life-saving research and comprehensive clinical care. Our UT Health San Antonio Polycystic Kidney disease (PKD) clinic is located on the - [Cleveland Clinic Foundation, Department of Kidney Medicine](https://pkdcure.org/centers/cleveland-clinic/) - Cleveland Clinic’s Glickman Urological and Kidney Institute, recognized worldwide for excellence in patient care, teaching and research, merges the urology and nephrology programs. This consolidation of disciplines allows us to better serve patients in the prevention, diagnosis and treatment of kidney disease while we continue to provide high-quality patient care and carry on innovative research - [Mass General Brigham](https://pkdcure.org/centers/mass-general-brigham/) - The Mass General Brigham (MGB) Kidney Genetics & PKD Clinic specializes in the care of individuals with genetic and familial kidney disorders, with a special focus on polycystic kidney disease (PKD). Our clinic provides comprehensive diagnostic evaluation and clinical care to those with known or suspected PKD and other inherited kidney diseases. We have offices - [Vanderbilt University Medical Center](https://pkdcure.org/centers/vanderbuild-university-medical-center/) - Our clinic is proud of our Patient-Centered approach to polycystic kidney disease care. We work closely with patients and their referring Providers to ensure that all patients with ADPKD receive high quality, cuttingedge counseling and care for their condition. Our multidisciplinary team ensures that patient preferences, goals and options are managed in a comprehensive way, - [Ochsner Medical Center](https://pkdcure.org/centers/ochsner-medical-center/) - We evaluate patients with polycystic kidney disease in the clinic, arrange brain imagine for aneaurysm screening and genetic testing if indicated, and order Tolvaptan through the REMS program for patients with Mayo Clinic class 1C and above. Go to Website - [Mayo Clinic (Florida)](https://pkdcure.org/centers/mayo-clinic-pkd-center-2/) - Mayo Clinic Florida PKD center has established a multidisciplinary holistic integrative clinic for ADPKD patients to provide the latest advances in the management of ADPKD and other inherited renal diseases. The Mayo Clinic Florida PKD center is committed to bring innovation and advance the standard of care of ADPKD patients by providing such a holistic - [University of Miami](https://pkdcure.org/centers/university-of-miami/) - The ADPKD Clinic of the University of Miami provides comprehensive, multidisciplinary, and individualized care for patients and families affected by ADPKD. Clinical services are provided at the UHealth and JMH outpatient clinics of the Katz Family Division of Nephrology and the UHealth/JMH Miami Transplant Institute (MTI). UHealth clinics are located at the Diabetes Research Institute - [SSM Saint Louis University Hospital](https://pkdcure.org/centers/saint-louis-university/) - SSM Saint Louis University Hospital Polycystic Kidney Diseases (PKD) center brings together ADPKD-focused specialists from many disciplines of care to manage the complexities that ADPKD patients face at every stage of disease. Our ADPKD expert nephrologists see patients in both outpatient and hospital settings and work with pediatric nephrologists, radiologists, hematologists, pain specialists, genetic counselors, - [Beth Israel Deaconess Medical Center](https://pkdcure.org/centers/beth-isreal-deaconess-medical-center/) - 1000 bed Harvard-affiliated academic medical center with an active outpatient clinic for all disciplines. Go to Website - [Montefiore Medical Center](https://pkdcure.org/centers/montefiore-medical-center/) - The ADPKD program at Montefiore is a patient and physician support program that supports patients with ADPKD who are taking Jynarque as well as assisting nephrologists in managing ADPKD. We help nephrologists identify patients who are appropriate candidates for Jynarque, provide extensive patient education on ADPKD and Jynarque, enroll patients in the Jynarque REMS, oversee - [Reliant Medical Group](https://pkdcure.org/centers/reliant-medical-group/) - We are a community based kidney disease clinic with locations throughout central Massachusetts. Our group consists of 4 full time kidney specialists and 3 nurses. In addition to treating all type of chronic kidney disease, we are also experts in treating resistant hypertension and electrolyte disorders. In terms of our ADPKD program: All of our - [University of California San Diego](https://pkdcure.org/centers/university-of-california-san-diego/) - UCSD Nephrology has multiple clinical sites in San Diego County and beyond. The two sites listed above are in close proximity to the two UCSD Hospitals and cater to the majority of patients. Nephrologists with expertise and interest in ADPKD are present at these locations during 5 half day clinic sessions per week. These sites - [University of Southern California Keck School of Medicine](https://pkdcure.org/centers/keck-medical-center-of-usc/) - The USC Keck PKD Clinic, under the auspices of the Keck School of Medicine of USC, Division of Nephrology and Hypertension, will provide and help coordinate comprehensive clinical care and support for patients with a suspected or confirmed diagnosis of polycystic kidney disease. We will also facilitate patient and practitioner participation in PKD clinical trials - [University of Kansas Health System](https://pkdcure.org/centers/university-of-kansas-medical-center-pkd-cinic/) - The University of Kansas Health System’s nephrology department has 11 nephrologists with vast expertise in inpatient, outpatient clinic, and dialysis care. Two nephrologists are experts in PKD. The department has a specific clinic dedicated to PKD patients. PKD Clinic is every Thursday afternoon from 1-5 pm. This clinic offers diagnosis, prognosis, and treatment of PKD. - [Partners in Nephrology and Endocrinology (PINE) - Washington](https://pkdcure.org/centers/partners-in-nephrology-and-endocrinology-pine-washington/) - PINE a leading nephrology and endocrinology group in the western Pennsylvania. For more than 35 years, our team has provided advanced treatment of kidney and endocrine diseases. We have over 30 providers, across more than 18 convenient locations in Allegheny, Butler, Lawrence, Washington counties. - [Partners in Nephrology and Endocrinology (PINE) - Jefferson Hills](https://pkdcure.org/centers/partners-in-nephrology-and-endocrinology-pine-jefferson-hills/) - PINE a leading nephrology and endocrinology group in the western Pennsylvania. For more than 35 years, our team has provided advanced treatment of kidney and endocrine diseases. We have over 30 providers, across more than 18 convenient locations in Allegheny, Butler, Lawrence, Washington counties. - [Partners in Nephrology and Endocrinology (PINE) - Carroll](https://pkdcure.org/centers/partners-in-nephrology-and-endocrinology-pine-carroll/) - PINE a leading nephrology and endocrinology group in the western Pennsylvania. For more than 35 years, our team has provided advanced treatment of kidney and endocrine diseases. We have over 30 providers, across more than 18 convenient locations in Allegheny, Butler, Lawrence, Washington counties. - [Yale University](https://pkdcure.org/centers/yale-university/) - The Yale Inherited Kidney Disease Program offers advanced care for patients with cystic kidney diseases, including ADPKD, ARPKD, and polycystic liver disease. Co-led by Dr. Stefan Somlo and Dr. Maryam Gondal, the program provides comprehensive evaluation, diagnosis, and risk prognostication with access to coordinated subspecialty and tertiary care through Yale Medicine and Yale New Haven - [Mayo Clinic (Rochester)](https://pkdcure.org/centers/mayo-clinic-pkd-center/) - The Mayo Clinic Pirnie Translational Polycystic Kidney Disease Center is a collaborative, multidisciplinary hub where PKD investigators work closely with Mayo Clinic clinicians and scientists. The team’s expertise spans adult and pediatric nephrology, urology, hepatology, liver surgery, cardiovascular and neurovascular diseases, pain medicine, diagnostic and interventional radiology, kidney and liver transplantation, dialysis, physiology, molecular biology, - [Mayo Clinic Children's (Rochester)](https://pkdcure.org/centers/mayo-clinic-childrens-center-rochester-2/) - The Mayo Clinic Pediatric Cystic Kidney Disease Clinic is part of the Mayo Clinic Pirnie Translational Polycystic Kidney Disease Center, a collaborative and multidisciplinary center that includes PKD investigators working alongside Mayo Clinic clinicians and scientists with expertise in pediatric and adult nephrology, urology, hepatology, surgery, cardiovascular and neurovascular diseases, pain medicine, diagnostic and interventional - [University of Michigan Medicine - Mott Children's Hospital](https://pkdcure.org/centers/university-of-michigan-medical-mott-childrens-hospital/) - Patients with ADPKD are currently either seen by a Pediatric Nephrologist in a dedicated Pediatric Nephrology-Genetics (Mott Hospital) or in a General Nephrology clinic (outreach clinics). This Nephrology-Genetics clinic (Mott Hospital) is run by a Pediatric Nephrologist in combination with a genetic counselor. Our clinic is supported by dietitians and social workers. We have easy - [UCSF Benioff Children's Hospital](https://pkdcure.org/centers/ucsf-benioff-childrens-hospital/) - The UCSF Pediatric Kidney Clinic specializes in caring for young patients, ranging from infants to teens, with PKD. We have the expertise and technologies to offer the most advanced treatments. Children with end-stage kidney failure have access to our state-ofthe-art Pediatric Dialysis Unit as well as our Kidney Transplant Program. Patients receive care from a - [Riley Hospital for Children](https://pkdcure.org/centers/riley-hospital-for-children/) - Riley Hospital for Children offers pediatric Nephrology clinic for patients with cystic kidney diseases, providing comprehensive care for children diagnosed with conditions such as polycystic kidney disease (PKD) and other cystic kidney disorders. We have multidisciplinary team of pediatric nephrologists, genetic counselors, dietitians, and social workers, ensuring holistic and personalized treatment plans. Services include advanced - [The Inherited Kidney Diseases Program at the Children’s Hospital of Philadelphia (CHOP)](https://pkdcure.org/centers/the-inherited-kidney-diseases-program-at-the-childrens-hospital-of-philadelphia-chop/) - The CHOP Inherited Kidney Diseases (IKD) program is a “one-stop shop” that provides diagnostics and clinical management for infants and children afflicted with polycystic kidney disease and other single gene disorders of kidney structure and function. The care team is centered in Nephrology, and includes expertise from hepatology, endocrinology, genetics, nutrition, and psychology. A patient - [Cleveland Clinic Children's](https://pkdcure.org/centers/cleveland-clinic-childrens/) - We provide primary and consultative care and treatment to children and adolescents with all forms of kidney disease, administered by a team of renal specialists from the joint nephrology/urology clinic. In addition, our Transplant Center has extensive experience with pediatric kidney transplantation, offering living-related and deceased donor renal transplantation services. Go to Website - [Children's National Hospital, Inherited and Polycystic Kidney Diseases Program](https://pkdcure.org/centers/childrens-national-hospital/) - Within the Division of Nephrology, we have created a center of excellence focused on PKD and other Inherited renal diseases. The Children’s National Inherited and Polycystic Kidney Disease (IPKD) program is a “one-stop shop” that provides patients with comprehensive care for every facet of their disease. The care team is centered in Nephrology, and includes - [University of Oklahoma](https://pkdcure.org/centers/ou-health-sciences-center-hereditary-kidney-disease-clinic/) - All aspects of PKD specific care Go to Website - [University of New Mexico](https://pkdcure.org/centers/university-of-new-mexico/) - General nephrology clinic consists of 9 providers, 1 RN, 1 MA. We provide services for CKD stage 1-5, pre-dialysis care including RRT preparation, specialized clinics for glomerular diseases, polycystic kidney diseases, onco-nephrology, hypertension, electrolyte imbalances, and pediatric-to-adult transitions. We provide care for anemia in kidney disease including Epogen/Retacrit injections. Go to Website - [University of California Irvine](https://pkdcure.org/centers/university-of-california-irvine-medical-center/) - nephrology clinic. UC-Irvine health system with access to other specialists within one organization. If we become a partner Clinic we can work to funnel all division neprhology patients to one clinic and further promote excellent and comprehensive PKD care Go to Website - [The Ohio State University](https://pkdcure.org/centers/the-ohio-state-university/) - We offer comprehensive multi-disciplinary care for ADPKD. We work closely with radiology to obtain kidney volume measurements to assess patients' risk for disease progression. We prescribe and monitor Tolvaptan therapy. Go to Website - [The Kidney and Hypertension Center (KHC)](https://pkdcure.org/centers/the-kidney-and-hypertension-center-khc/) - KHC is the premier and largest nephrology group covering Cincinnati metropolitan area providing comprehensive nephrology care including preventive kidney health screenings to advanced treatments for chronic kidney disease, kidney transplant evaluations and management (with expertise in native nephrectomies), interventional nephrology (comprehensive dialysis access care and pd catheter placemen) and dialysis care (in center and home - [Rockford Nephrology Associates](https://pkdcure.org/centers/rockford-nephrology-associates/) - Comprehensive Nephrology Care by 10 Board Certified Nephrologists and support staff Go to Website - [Renal Associates of Baton Rouge, LLC](https://pkdcure.org/centers/renal-associates-of-baton-rouge-llc/) - Areas of treatment: Nephrology - The study of the function and diseases of the kidney and related organs. Problem Hypertension - We help individuals whose blood pressure readings are chronically above the normal range. Chronic Kidney Disease - We diagnose and treat anemia associated with chronic kidney disease which can improve quality of life and - [North Carolina Nephrology Associates](https://pkdcure.org/centers/north-carolina-nephrology-associates/) - We are a full service nephrology clinic based in Wake County, NC. We offer ADPKD treatment (Jynarque), genetic testing, and clinical research opportunities. Go to Website - [Mount Sinai Hospital](https://pkdcure.org/centers/icahn-school-of-medicine-at-mount-sinai/) - The Mount Sinai Hospital is ranked 12th for Nephrology by U.S. News & World Report. The Mount Sinai Hospital provides expert diagnosis and treatment of all forms of kidney disease. We coordinate your care with other doctors and design a personalized plan to treat your kidney problems. Along with our excellent hospitals and convenient medical - [Nephrology Associates of Mobile, P.A.](https://pkdcure.org/centers/nephrology-associates-of-mobile-p-a/) - Nephrology Associates of Mobile offers the following medical services: In Center Hemodialysis, Dialysis: Peritoneal, Home Hemodialysis, Nocturnal Dialysis, “Working Shift” Dialysis, Dialysis Access Procedures (At Mobile Vascular Labs, LLC), Anemia Management, Post-Transplant Care Nephrology Associates of Mobile treats the following conditions: Chronic Kidney Disease, Acute Kidney Inury, End State Renal Disease, Kidney Transplant Care, Anemia, - [Nephrology and Hypertension Specialists (GA)](https://pkdcure.org/centers/nephrology-and-hypertension-specialists-ga/) - Nephrology and Hypertension Specialists excels in providing advanced kidney and hypertension care so you can focus on the good things in life. We are a group of compassionate healthcare professionals providing excellent care for all patients with kidney and associated diseases including polycystic kidney disease. We have access to a regional hospital with advanced testing - [Munson Healthcare Kidney and Hyptertension Specialists](https://pkdcure.org/centers/munson-healthcare-kidney-and-hyptertension-specialists/) - Munson Healthcare serves people across 29 counties of Northern Michigan, and most of the region’s 590,000 residents receive their medical care at Munson Healthcare facilities. Munson Kidney and Hypertension Specialists is the only nephrology practice in our local community, and our practice also provides outreach across Northern Michigan as well. Munson Healthcare Kidney and Hypertension - [Loma Linda University Health](https://pkdcure.org/centers/loma-linda-university-health/) - We provide the following services: Diagnostic services, Genetic counselling and testing, Blood pressure management, Pain management, Dietary and nutrition counselling, Clinical trials Interventional therapies, Dialysis and transplant consultation, Support groups and counselling, Medication management including Tolvaptan Go to Website - [Gundersen Health System](https://pkdcure.org/centers/gundersen-health-system/) - Whether you have a new kidney problem or are actively managing kidney disease, you want the best treatment and specialist. We are committed to helping you prevent the progression of the disease. Offering: Apheresis, Inpatient dialysis in our La Crosse hospital Outpatient, consultations, Outpatient hemodialysis in Onalaska, Prairie du Chien, Tomah and Viroqua, Home dialysis/Peritoneal - [Greater Hartford Nephrology](https://pkdcure.org/centers/greater-hartford-nephrology/) - We offer comprehensive PKD that includes diagnosis, imaging, genetic testing and treatment. Go to Website - [George Washington University](https://pkdcure.org/centers/george-washington-university/) - In our multidisciplinary clinic, a group of highly talented physicians will work together to implement preventive strategies and provide the state of treatment where needed. We will also use cutting edge genetic tests and imaging techniques to prognosticate the disease progression and implement preventive treatments aimed at slowing the growth of the cysts. Our team - [Froedtert and the Medical College of Wisconsin](https://pkdcure.org/centers/froedtert-and-the-medical-college-of-wisconsin/) - Our nephrologists are up to date on the newest guidelines of care for PKD. Our clinic is familiar with tolvaptan prescription protocols for patients who would benefit. We also have a world-class transplant program within our institution, which is important to provide timely, holistic care. Go to Website - [Dallas Renal Group](https://pkdcure.org/centers/dallas-renal-group/) - PKD Clinic for newly diagnosed patients offering genetic testing along with treatment/REMS monitoring. Go to Website - [Commonwealth Nephrology Associates](https://pkdcure.org/centers/commonwealth-nephrology-associates/) - Commonwealth Nephrology Associates specializes in the care of patients with all causes of chronic kidney disease. As one of the most common renal genetic diseases, we have a large population of polycystic kidney disease patients and work to minimize kidney disease and cyst progression using our knowledge of the latest advances in management. Each of - [Columbia Nephrology](https://pkdcure.org/centers/columbia-nephrology/) - Columbia Nephrology is a comprehensive nephrology clinic that consists of 20 physicians and 11 physician extenders. We have convenient clinic locations across the greater Columbia area. Our clinics offer all aspects of nephrology care which includes acute and chronic kidney disease management, treatment of glomerular conditions, hypertension management along with dialysis and ongoing management of - [CHI Health Creighton University Medical Center - Bergan Mercy](https://pkdcure.org/centers/chi-health-creighton-university-medical-center-bergan-mercy/) - Our clinic offers a multidisciplinary approach, we are dedicated to improving patient outcomes through early intervention, patient education, and ongoing support, ensuring our patients receive the highest standard of care at every stage of their kidney disease journey. Go to Website - [University of Maryland School of Medicine](https://pkdcure.org/centers/university-of-maryland-medical-center-baltimore-pkd-center/) - The inherited kidney disease clinic at the University of Maryland provides comprehensive and compassionate care for patients with all forms and stages of genetic cystic kidney and liver disease(s). Our on site services include transplant surgery and nephrologist, urology, radiology, interventional radiology, hepatology and neuroradiology/neurosurgery. The University of Maryland is home to a cutting edge - [University of Colorado Anschutz Medical Campus](https://pkdcure.org/centers/university-of-colorado-denver/) - The Renal Division at the University of Colorado is consistently ranked within the top kidney programs in the U.S. Our nationally – and internationally – recognized healthcare professionals specialize in treating patients with a wide variety of kidney diseases, end-stage kidney disease, kidney transplant evaluation and post-transplant care, immune-mediated kidney disease, hypertension, kidney stones and - [Washington University School of Medicine](https://pkdcure.org/centers/washington-university-school-of-medicine/) - The Division of Nephrology at Washington University School of Medicine is at the cutting edge of research on cystic diseases affecting the kidney at both the basic science level and in clinical applications by translating these discoveries to patient care. Our REMS-certified physicians possess extensive expertise in prescribing tolvaptan and monitoring its use to slow - [University of Pennsylvania](https://pkdcure.org/centers/university-of-pennsylvania/) - At Penn Medicine's Polycystic Kidney Disease (PKD) Clinic, we provide complete care, diagnosis and treatment for autosomal dominant polycystic kidney disease (ADPKD). We treat patients with PKD in collaboration with multiple specialists throughout Penn Medicine including Cardiology, Urology, Interventional Radiology, End-Stage Kidney Disease programs and Transplantation, Gastroenterology, Hepatology, Neurosurgery, Medical Genetics, Pain Clinic, Stone Clinic - [University of North Carolina at Chapel Hill](https://pkdcure.org/centers/university-of-north-carolina-chapel-hill/) - We have a collaborative clinic environment, incorporating services of nephrologists, advanced practice providers, nurses, dieticians, CKD educators, and coordinators who provide specialty nephrology care, including the care of patients with genetic disorders such as ADPKD. Nephrologists experienced in the care of polycystic kidney disease work with a a team of radiologists, genetic counselors, hepatologists, interventional - [University of Michigan Medical Center](https://pkdcure.org/centers/university-of-michigan-medical-center/) - We are a general nephrology clinic with expertise in managing patients with PKD, including available multi-specialty consultation and tolvaptan therapy. Go to Website - [University of California San Francisco](https://pkdcure.org/centers/ucsf-nephrology/) - This is a comprehensive nephrology clinic embedded in the UCSF Nephrology Faculty Practice. We have a dedicated focus on care for patients with PKD and other genetic conditions. Multiple providers and staff are available to serve the needs of patients. Go to Website - [University of California Los Angeles](https://pkdcure.org/centers/ucla-pkd-program-under-core-kidney-program-at-ucla/) - UCLA PKD Program was established in 2010 with one goal – to fulfill the unmet need in care for ADPKD patients. At that time, what was quite obvious to Dr Rastogi and his team at UCLA that the care for a ADPKD patient was fragmented. PKD program was established to provide true comprehensive integrated care - [The Rogosin Institute](https://pkdcure.org/centers/the-rogosin-institute/) - The Jack J. Dreyfus Outpatient Clinic at the Rogosin Institute is the primary site for new patient and follow-up patient visits. It is located at the NewYork-Presbyterian/Weill Cornell can1pus. Available services include collection of blood and urine samples and intravenous infusions of medications and fluids. Referrals are provided to consultants and services that are on-campus, - [The Kidney Institute Houston, TX](https://pkdcure.org/centers/the-kidney-institute-houston-tx/) - The Kidney Institute is a mixed private practice and academic clinic serving The Texas Medical Center, North Houston, Northwest Houston and The Woodlands. We have nephrologists experienced in up to date management of polycystic kidney disease who can serve patients in all of these geographic areas. Most of our team hold positions as faculty members - [Swedish Medical Center](https://pkdcure.org/centers/swedish-center-for-comprehensive-care/) - Polycystic Disease Program -Polycystic kidney disease (PKD) is a complex condition that can impact patinet health in many ways. To manage PKD properly, patients need more than a nephrologist. pateints need a team of doctors and nurses with adequate expertise in PKD working together. At Swedish, our goal is to give patients comprehensive, individualized care. - [St. Luke's Clinic - Kidney and Hypertension](https://pkdcure.org/centers/st-lukes-clinic-kidney-and-hypertension/) - The team at St. Luke’s Clinic – Kidney and Hypertension provides comprehensive care that focuses on early diagnosis and treatment of chronic kidney disease and hypertension, including extensive patient education programs and advancing nephrology care through clinical research. Go to Website - [Nephrology Associates of Tidewater](https://pkdcure.org/centers/nephrology-associates-of-tidewater/) - The clinic is a teaching clinic for Fellows of the Nephrology training program at EVMS. The clinic focuses on ADPKD, Fabry disease, APOL1 and other congenital kidney diseases. We offer all aspects of care from diagnosis, treatment, clinical trials, dialysis, and transplantation. Go to Website - [Medical University of South Carolina](https://pkdcure.org/centers/medical-university-of-south-carolina/) - The Medical University of South Carolina (MUSC) Division of Nephrology provides comprehensive treatment for all forms of kidney disease. Physicians in the Division see clinical patients at Ashley River Tower, University Hospital, the Ralph H. Johnson VA Medical Center, and outreach locations in West Ashley, East Cooper, and North Charleston. There are a total of nine - [Mayo Clinic (Arizona)](https://pkdcure.org/centers/mayo-clinic-arizona/) - Mayo Clinic's top-ranked team of kidney and hypertension specialists (nephrologists) diagnose and treat more than 30,000 adults and children each year, including those with serious, complex or rare conditions. The Mayo Clinic Division of Nephrology and Hypertension is one of the largest and most respected kidney (renal) and high blood pressure (hypertension) practices in - [Geisinger Clinic](https://pkdcure.org/centers/geisinger-nephrology/) - We have an innovative, population-health based ADPKD clinic. Besides usual referrals to our tertiary care center, we have built electronic health record tools to detect diagnoses of ADPKD and direct marketing for the clinic and education to any identified patients along with their nephrologists. We inform patients about the FDA approval for tolvaptan to slow - [University of Iowa Hospitals and Clinics](https://pkdcure.org/centers/university-of-iowa/) - Comprehensive ADPKD care including experts in clinical PKD, clinical experts in Genetics of PKD, dedicated genetic counselor, kidney seq testing over over 330 renal specific genes through the Iowa Institute of Human genetics including ciliopathies and tubulointerstitial diseases expert radiologists with experience in measuring total kidney volume, PKD expert pharmacisit whith experience in prescribing Tolvaptan - [University of Texas Health Science Center at Houston, McGovern Medical School](https://pkdcure.org/centers/university-of-texas-health-science-center-at-houston-mcgovern-medical-school/) - We are dedicated to providing specialized medical attention and comprehensive care for individuals diagnosed with Adult Polycystic Kidney Disease (APKD). Our services include personalized consultations and advanced diagnostic tools, Treatment includes the management of symptoms, slowing disease progression, and addressing complications such as hypertension and pain, as well as genetic counseling, patient education programs, and - [El Paso Kidney Specialists](https://pkdcure.org/centers/el-paso-kidney-specialists/) - Our center’s mission is to provide dedicated and individualized comprehensive care for adults with ADPKD in the El Paso TX and Eastern New Mexico Region. - [University of Alabama at Birmingham](https://pkdcure.org/centers/uab-polycystic-kidney-disease-at-the-kirklin-clinic/) - UAB PKD Clinic offers access to comprehensive medical care through the UAB Health System. - [Thomas Jefferson University Hospital](https://pkdcure.org/centers/thomas-jefferson-university-hospital/) - Established in 2018, Jefferson’s PKD clinic is housed within the Division of Nephrology. The main goals of the Jefferson PKD clinic are to delay the need for renal replacement therapy, collaborate with other organizations to find treatments and a cure, and to ultimately improve the lives of those the disease affects. The clinic provides state-of-the-art - [SUNY Downstate Health Sciences University](https://pkdcure.org/centers/suny-downstate-health-sciences-university/) - UHB Nephrology clinic offers comprehensive services to ADPKD patients referred from primary care providers in the community with suspected cystic kidney diseases detected on a routine ultrasound of the abdomen, or a CT Scan, or patients who have a family history of ADPKD, or have CKD with cysts. This clinic is open 7 days a - [Indiana University School of Medicine](https://pkdcure.org/centers/indiana-university-school-of-medicine/) - Large multidisciplinary outpatient center in a tertiary care, academic medical center. - [University of Wisconsin Madison](https://pkdcure.org/centers/university-of-wisconsin-kidney-clinic/) - The UW PKD Clinic was established in 2016 to help provide state-of-the-art patient care to individuals with PKD in Wisconsin and neighboring areas. The clinic also aimed to form the backbone of UW PKD research program and learner education in PKD. The current PKD-focused providers at our clinic include Dr. Gauri Bhutani, Dr. Micah Chan, ## FAQs - [I don’t see my place of care listed in the PKD Foundation Centers of Excellence Program. How can my clinic become part of the COE Program?](https://pkdcure.org/blog/faq/i-dont-see-my-place-of-care-listed-in-the-pkd-foundation-centers-of-excellence-program-how-can-my-clinic-become-part-of-the-coe-program/) - If your clinic or provider is not currently listed in the PKD Foundation COE Program, it may simply mean that they have not yet applied. The COE Program is a voluntary application-based initiative. We encourage you to share information about the program with your care team—they may be interested in joining. You can use this - [Participant Engagement module](https://pkdcure.org/blog/faq/participant-engagement-module/) - 5-10 minutes This module asks about your experience with the ADPKD Registry so far, what you like and don’t like, your opinions on the newsletter and Registry dashboard, etc. - [Social Determinants of Health module](https://pkdcure.org/blog/faq/social-determinants-of-health-module/) - 5-10 minutes This module asks about your education, household income, employment, language, community type, access to food, housing/utilities, and transportation. The information from this module will be used to help researchers identify social determinants of health areas that need support with the purpose of improving outcomes and access for all ADPKD patients. - [Patient-Centered Insights on Treatment Adherence and Social Determinants of Health study](https://pkdcure.org/blog/faq/patient-centered-insights-on-treatment-adherence-and-social-determinants-of-health-study/) - 5-10 minutes This module asks about your demographics, place of care, treatments for ADPKD, and barriers to treatment adherence. The information collected in this module will be used in a greater study run by the PKD Foundation research team in comparison to non-Registry users that complete the same survey via. Survey Monkey. - [Can I send a donation via check?](https://pkdcure.org/blog/faq/can-i-send-a-donation-via-check/) - To send a check to the PKD Foundation, please make the check payable to "PKD Foundation" and mail it to: PKD Foundation PO Box 871847 Kansas City, MO 64187 - [Where can I find more information about the ARPKD Patient Database?](https://pkdcure.org/blog/faq/where-can-i-find-more-information-about-the-arpkd-patient-database/) - Download a flyer for more information and to learn how to participate in the online database. - [What specific research initiatives or projects does the PKD Foundation currently support?](https://pkdcure.org/blog/faq/what-specific-research-initiatives-or-projects-does-the-pkd-foundation-currently-support/) - Since the Foundation’s establishment in 1982, it has invested nearly $60 million in dedicated PKD research, clinical and scientific grant awards, fellowships, and scientific meetings. The Foundation’s financial commitment over the years has seen results on a local, national, and even global level, including initiating funding for young investigators from around the world, supporting innovative - [How does the COE program ensure consistent and high-quality care across participating centers?](https://pkdcure.org/blog/faq/how-does-the-coe-program-ensure-consistent-and-high-quality-care-across-participating-centers/) - Progress Reports Designation as an PKD Center of Excellence, Pediatric Center of Excellence, Pediatric Clinic, or Partner Clinic is valid for three years. Clinics must participate in a review if there have been any changes to their clinic director and they must reapply at the end of their designation term if they wish to remain - [Where can I find additional resources?](https://pkdcure.org/blog/faq/where-can-i-find-additional-resources/) - You can find additional resources by visiting our resource library. - [What is ARPKD?](https://pkdcure.org/blog/faq/what-is-arpkd/) - Diagnosis Related health complications Symptoms Causes - [What is PKD?](https://pkdcure.org/blog/faq/what-is-pkd/) - Kidney 101 Parents of children with PKD What are cysts? - [What resources and support does the PKD Foundation provide to COE?](https://pkdcure.org/blog/faq/what-resources-and-support-does-the-pkd-foundation-provide-to-coe/) - Clinicians in the COE Network have access to an exclusive resource page that includes peer-to-peer education, continuing medical education opportunities, and more. We also host quarterly virtual meetings for clinic directors, offering clinicians nationwide the opportunity to connect with peers, share insights, and engage in valuable mentorship opportunities within the COE Program. - [How does participation in the COE program impact patient outcomes?](https://pkdcure.org/blog/faq/how-does-participation-in-the-coe-program-impact-patient-outcomes/) - PKD Centers of Excellence provide comprehensive, multidisciplinary clinical service for families affected by PKD in the United States. Services are centered around an organized PKD clinic in which an individual’s clinical care needs are defined, plans are made to fulfill those needs, and follow-up is provided to continuously optimize clinical management. - [Are there any clinical trials or research studies available for PKD patients?](https://pkdcure.org/blog/faq/are-there-any-clinical-trials-or-research-studies-available-for-pkd-patients/) - Yes, there are ongoing clinical trials and research studies investigating potential treatments and therapies for PKD. Our Accelerating Clinical Trials (ACT) Alerts can help keep you updated by email about ongoing ADPKD and ARPKD studies seeking participants. Sign Up for ACT Alerts - [How can I stay informed about the latest developments in PKD research and treatments?](https://pkdcure.org/blog/faq/how-can-i-stay-informed-about-the-latest-developments-in-pkd-research-and-treatments/) - The PKD Foundation and other reputable organizations provide reliable information and updates about PKD research, treatments, clinical trials, and patient resources. You can subscribe to our newsletters, follow us on social media, and attend educational events to stay informed and empowered in managing your PKD journey. Sign Up for ACT Alerts - [ADPKD impact scale](https://pkdcure.org/blog/faq/adpkd-impact-scale/) - 5-10 minutes This module asks you about your personal experience with PKD over the past two weeks. Your answers will help us understand how physical, emotional, and fatigue impact your PKD. - [How do I find up to date information on treating PKD?](https://pkdcure.org/blog/faq/how-do-i-find-up-to-date-information-on-treating-pkd/) - Get the latest information on treating PKD with UpToDate. - [Where can I find more information about the Centers of Excellence Program?](https://pkdcure.org/blog/faq/where-can-i-find-more-information-about-the-centers-of-excellence-program/) - Discover more about PKD Foundation Centers of Excellence and download information you can share with your care team. - [What is ADPKD?](https://pkdcure.org/blog/faq/what-is-adpkd/) - Diagnosis Related health complications Stages Symptoms Causes Treatment - [How can I connect with other PKD patients and find support?](https://pkdcure.org/blog/faq/how-can-i-connect-with-other-pkd-patients-and-find-support/) - Connecting with other PKD patients and support groups can provide valuable emotional support, practical advice, and resources for managing the challenges of living with PKD. The PKD Foundation has local communities across the country where you can find support and education from those who understand what you’re going through. We also have two virtual communities - [Where can I find more information about the Centers of Excellence?](https://pkdcure.org/blog/faq/where-can-i-find-more-information-about-the-centers-of-excellence/) - Learn more about the Centers of Excellence Program. - [What if I have other questions?](https://pkdcure.org/blog/faq/what-if-i-have-other-questions/) - For questions regarding your company’s program policies, please contact your employer’s HR department. Much of the necessary information is also available on your company intranet. For questions about obtaining a tax receipt or submitting and verifying a matching gift request or a volunteer grant, please email us. - [What are the program’s goals, and how will this benefit the PKD community?](https://pkdcure.org/blog/faq/what-are-the-programs-goals-and-how-will-this-benefit-the-pkd-community/) - Improving the lives of patients with ADPKD and their families through patient-centered care. Encouraging disease-specific management strategies. Identifying and recognizing gaps in clinical care to improve ADPKD outcomes. Providing comprehensive, multidisciplinary clinical services. Developing and maintaining mentoring relationships between recognized PKD experts and less experienced nephrologists and community specialists. Improving health equity across communities and - [How does this fit with the PKD Foundation’s research focus?](https://pkdcure.org/blog/faq/how-does-this-fit-with-the-pkd-foundations-research-focus/) - While improving lives today, the Centers of Excellence will drive research advancements and quality care by: Increasing research opportunities, collaboration, mentorships, communication, and education. Leveraging collective resources to accelerate translational research (turning scientific discoveries into new treatments). - [What should I do if there is not a clinic near me?](https://pkdcure.org/blog/faq/what-should-i-do-if-there-is-not-a-clinic-near-me/) - If there is not a Center of Excellence near you, please share this document with your nephrologist. We accept applications on a yearly basis. - [What types of medical services do Centers of Excellence provide?](https://pkdcure.org/blog/faq/what-types-of-medical-services-do-centers-of-excellence-provide/) - A Center of Excellence will offer diagnostic and therapeutic services with identified staff responsible for most services in each of the following disciplines: Core specialists may include: Nephrology Radiology Nutrition Hepatology Genetics Pain management Patient navigation services Non-core specialists may include: Pediatric nephrologists Kidney nutritionists/dieticians Urologists Cardiologists Liver surgeons Neurosurgeons/neurologists Obstetricians (high-risk pregnancy specialization) Psychologists/psychiatrists - [How do Centers of Excellence work?](https://pkdcure.org/blog/faq/how-do-centers-of-excellence-work/) - Centers of Excellence provide comprehensive, multidisciplinary clinical services for families affected by ADPKD. Services are coordinated through the center to define an individual’s clinical care needs. Plans are then made to fulfill those needs, and follow-up is provided to continually optimize clinical management. Patient navigator(s) provide the first point of contact and coordinate your care. - [What is the difference between a Center of Excellence and a Partner Clinic?](https://pkdcure.org/blog/faq/what-is-the-difference-between-a-center-of-excellence-and-a-partner-clinic/) - Providers are categorized as Centers of Excellence or Partner Clinics based on the level of services offered. Centers of Excellence provide the broadest range of services and expertise. Partner Clinics include, at a minimum, a nephrologist interested in specialized management of ADPKD. Partner Clinics are part of the overall mentorship and educational network. Pediatric Clinics - [How are PKD Centers of Excellence chosen?](https://pkdcure.org/blog/faq/how-are-pkd-centers-of-excellence-chosen/) - The selection process is rigorous, based on requirements established by the PKD Foundation. After institutions apply, they’re reviewed by a PKD Foundation expert panel, including clinician and patient stakeholders. - [How is this information obtained?](https://pkdcure.org/blog/faq/how-is-this-information-obtained/) - We partner with a company called Double the Donation. If you see anything that should be changed, please email Double the Donation’s team. - [Can my company’s matching gift be applied to a participant, team, or event?](https://pkdcure.org/blog/faq/can-my-companys-matching-gift-be-applied-to-a-participant-team-or-event/) - Absolutely! Matching gifts are a great opportunity to boost participants’ fundraising totals. - [I didn’t find my company on the search page](https://pkdcure.org/blog/faq/i-didnt-find-my-company-on-the-search-page/) - It’s still possible that your employer will match your donation, even if you don’t find your company on our list. Check with your company’s HR manager and ask if your donation can be matched. - [What are volunteer grant programs?](https://pkdcure.org/blog/faq/what-are-volunteer-grant-programs/) - Volunteer grant programs (also referred to as volunteer matching programs or “Dollars for Doers”) are corporate giving programs in which companies provide monetary donations to organizations where employees volunteer regularly. For example, if you volunteered as a team captain and spent time raising awareness and funds for the Walk for PKD, your employer may donate - [I made a donation a few months ago. Can I still apply for a matching gift?](https://pkdcure.org/blog/faq/i-made-a-donation-a-few-months-ago-can-i-still-apply-for-a-matching-gift/) - Yes! It’s not too late to apply for a matching gift. Many companies allow employees to submit match requests up to one year following the date of the donation. - [How do I request a matching gift?](https://pkdcure.org/blog/faq/how-do-i-request-a-matching-gift/) - Requesting a matching gift is normally a five-minute process that you, the donor, must initiate. You can do this by filling out and submitting a paper form provided by your employer or through an electronic submission process. There are typically three steps: Donate Make your donation and save your tax receipt. Many matching programs will - [What is a matching gift?](https://pkdcure.org/blog/faq/what-is-a-matching-gift/) - Employee matching gift programs are corporate giving programs. For example, let’s say your company’s matching gift policy has a minimum gift requirement of $25 and matches at a 1:1 ratio. If you donate $100 to the PKD Foundation and submit your matching gift form, your company will write a check for $100. This doubles your - [Where can I find more resources?](https://pkdcure.org/blog/faq/where-can-i-find-more-resources/) - Search by keyword or select a topic to access reports, read articles, and watch webinars on ARPKD, ADPKD, and more. Resource page - [Experience with liver cysts](https://pkdcure.org/blog/faq/experience-with-liver-cysts/) - 5-10 minutes This module asks about your medical history with liver cysts. Make sure you know: How your liver cysts were discovered. Issues you believe to be due to liver cysts. Medication you’re taking for your liver cysts. - [Healthcare access and utilization](https://pkdcure.org/blog/faq/healthcare-access-and-utilization/) - 10-15 minutes This module asks about your experience accessing care for your PKD. We’ll ask about: The clinicians who manage your disease The challenges you may have faced affording and accessing: Medications Procedures Dialysis and transplant services Other medical costs - [Diet and lifestyle](https://pkdcure.org/blog/faq/diet-and-lifestyle/) - 5-10 minutes This module asks about your diet and lifestyle. We’ll ask about: Any dietary supplements you take (ex: fish oil, folic acid) Alcohol and caffeine consumption (coffee, tea, and soda) How much water you drink on an average day Your exercise habits Food you exclude from your diet (ex: meat, eggs, salt) - [Family history](https://pkdcure.org/blog/faq/family-history/) - ~25 minutes This module asks about your family history of ADPKD. It should take about 25 minutes depending on your familiarity with your family’s experience with PKD. - [Vascular outcomes](https://pkdcure.org/blog/faq/vascular-outcomes/) - 5-15 minutes This module asks about your experience with brain, chest, or abdominal aneurysms. Make sure you know: How your aneurysm was diagnosed or screened for (if applicable). The size of your aneurysm and treatment methods (if applicable). Your family history of aneurysms. - [Pain and discomfort scale](https://pkdcure.org/blog/faq/pain-and-discomfort-scale/) - 5-10 minutes This module asks about your experience with pain over the past seven days. Your answers help us understand your PKD pains. Note: If you are a transplant patient and have had your PKD kidneys removed, this survey may not apply to you. - [Core questionnaire](https://pkdcure.org/blog/faq/core-questionnaire/) - 10-15 minutes This module asks about your personal medical history. Please make sure you know your: Most recent kidney function lab values (creatinine and eGFR). Year of diagnosis. Name of your physician and medical center. Month and year you began medication for high blood pressure (if applicable). - [Where can I find resource articles?](https://pkdcure.org/blog/faq/where-can-i-find-resource-articles/) - From resources to research, we’ve consolidated years of information so you can easily find the information and answers you need. View our Resources. - [Should I limit the physical activity of a child who has ADPKD?](https://pkdcure.org/blog/faq/should-i-limit-the-physical-activity-of-a-child-who-has-adpkd/) - There is no information to support limiting physical activity in any child simply because they have ADPKD. It’s possible that children with large kidneys and/or large cysts may have more episodes of blood in the urine if they play contact sports such as football. However, each child should be evaluated by a doctor on an - [Are sports dangerous to my kidneys?](https://pkdcure.org/blog/faq/are-sports-dangerous-to-my-kidneys/) - In general, most sports don’t affect kidney function. With the unique nature of PKD, where kidneys are enlarged and cysts can rupture, there are some simple precautions to take and issues to consider. Contact sports where the kidneys may be traumatized (flank/side or lower back impact) should either be avoided or protective pads should be - [What kind of exercise is best?](https://pkdcure.org/blog/faq/what-kind-of-exercise-is-best/) - There is no one best kind of exercise. The key is to find an activity that is comfortable for you and you enjoy doing. Generally, PKD patients can do any activity they want unless they get blood in the urine or it causes back, flank, or abdominal pain. The exercises that are least jarring to - [Is there ongoing research into PKD treatments?](https://pkdcure.org/blog/faq/is-there-ongoing-research-into-pkd-treatments/) - Yes, there is ongoing research into polycystic kidney disease (PKD) focused on developing more effective therapies and treatments to slow disease progression, manage symptoms, and ultimately find a cure. Researchers are exploring various approaches, including targeted medications to inhibit cyst growth, gene therapy to correct genetic mutations, and innovative surgical techniques. Clinical trials are also - [What lifestyle changes can help manage PKD?](https://pkdcure.org/blog/faq/what-lifestyle-changes-can-help-manage-pkd/) - Several lifestyle changes can help manage PKD and promote overall health: Maintain a healthy diet: Consuming a balanced diet low in sodium, saturated fats, and cholesterol can help manage blood pressure and reduce the risk of complications such as cardiovascular disease. Focus on incorporating fruits, vegetables, whole grains, lean proteins, and healthy fats into your - [Is there a risk of passing PKD on to my children?](https://pkdcure.org/blog/faq/is-there-a-risk-of-passing-pkd-on-to-my-children/) - Yes, there is a risk of passing on PKD on to your children if you have the genetic mutation associated with the condition. PKD is an inherited disorder caused by genetic mutations, and if one or both parents have PKD, there is a chance that their children may inherit the mutated gene and develop the - [Can PKD affect other organs besides the kidneys?](https://pkdcure.org/blog/faq/can-pkd-affect-other-organs-besides-the-kidneys-2/) - Yes, PKD can affect other organs besides the kidneys. It can lead to the development of cysts in other organs such as the liver, pancreas, spleen, and intestines. Additionally, PKD may be associated with certain cardiovascular conditions such as heart valve abnormalities and brain aneurysms. Regular monitoring and management are essential to address potential complications - [What complications can arise from PKD?](https://pkdcure.org/blog/faq/what-complications-can-arise-from-pkd/) - PKD can lead to several complications, including high blood pressure, kidney stones, urinary tract infections, kidney failure, cyst infections, liver cysts, brain aneurysms, and heart valve abnormalities. Prompt medical attention and proactive management are essential to address these potential complications and maintain overall health. - [Can PKD be cured?](https://pkdcure.org/blog/faq/can-pkd-be-cured-2/) - Currently, there is no cure for PKD. However, various treatments can help manage symptoms and slow the progression of the disease. Research efforts continue to explore potential therapies and interventions aimed at finding a cure for PKD in the future. - [Is PKD hereditary?](https://pkdcure.org/blog/faq/is-pkd-hereditary/) - Yes, PKD is hereditary. It is caused by genetic mutations that are passed down from parents to their children. - [Are there any support groups for individuals with PKD and their families?](https://pkdcure.org/blog/faq/are-there-any-support-groups-for-individuals-with-pkd-and-their-families/) - Yes, there are multiple ways PKD patients and families can find support. Through our PKD Communities, people can find opportunities to learn, connect, act, and ensure no one faces PKD alone. There are three types of communities: Local Communities: based on geographical location PKD Thrive: for young adults with PKD PKD Parents: for parents of - [How is PKD treated?](https://pkdcure.org/blog/faq/how-is-pkd-treated/) - PKD is managed through various treatments aimed at addressing symptoms and slowing disease progression. Treatment may include lifestyle changes, medication to manage complications like high blood pressure and pain, and interventions such as cyst drainage or surgery in severe cases. Regular monitoring by healthcare professionals is crucial to tailor treatment plans and provide optimal care - [What specialized services and expertise does a COE offer?](https://pkdcure.org/blog/faq/what-specialized-services-and-expertise-does-a-coe-offer/) - Nephrology Radiology Hepatology Genetics Pain Patient navigator services, as well as others Learn more - [What criteria are used to designate a center as a PKD Foundation COE?](https://pkdcure.org/blog/faq/what-criteria-are-used-to-designate-a-center-as-a-pkd-foundation-coe/) - Multiple experienced ADPKD nephrologists (nurse practitioners, physicians assistants, and advanced practice providers may also be considered) Trained in tolvaptan Risk Evaluation and Mitigation Strategy (REMS) program with experience managing patients on the therapy Access to core care team members onsite/on campus as listed above in "COE Care Team Expectations" Workflow in place for measurement of - [What is the process for disseminating research findings to the scientific community?](https://pkdcure.org/blog/faq/what-is-the-process-for-disseminating-research-findings-to-the-scientific-community/) - We are committed to providing resources for medical professionals to educate and empower their patients with PKD to manage and improve their health. To provide medical professionals with in-depth information about various aspects of PKD, we have teamed up with UpToDate, an evidence based, peer reviewed online information resource. Learn more - [How does the PKD Foundation engage with the research community?](https://pkdcure.org/blog/faq/how-does-the-pkd-foundation-engage-with-the-research-community/) - The PKD Foundation engages with the research community in several ways. Through our researcher newsletter, researchers can opt-in to receive notifications about funding opportunities (funding from the PKD Foundation and external partners), educational opportunities, events, ongoing research, and more. For researchers seeking participants for clinical trials, studies can be submitted to us for consideration and - [What resources does the PKD Foundation provide to support research efforts?](https://pkdcure.org/blog/faq/what-resources-does-the-pkd-foundation-provide-to-support-research-efforts/) - Learn all about our research efforts here. - [What funding opportunities are available for researchers, and what are the application requirements and deadlines?](https://pkdcure.org/blog/faq/what-funding-opportunities-are-available-for-researchers-and-what-are-the-application-requirements-and-deadlines/) - In 2022, we awarded new research funding to 11 outstanding PKD researchers. In 2023, we’ve increased that number to 13! The goal of the Research Grant and Fellowship Programs is to fund critical research to increase understanding of the genetic and pathological processes involved in PKD and to accelerate the development of potential therapies for - [How can I learn more about the research conducted using the ADPKD Registry?](https://pkdcure.org/blog/faq/how-can-i-learn-more-about-the-research-conducted-using-the-adpkd-registry/) - The PKD Foundation regularly updates participants on research findings, clinical trials, and other relevant developments through newsletters, emails, and educational materials. You can also visit the PKD Foundation’s website or contact them directly for more information about ongoing research projects and how you can get involved. - [Can I withdraw from the ADPKD Registry at any time?](https://pkdcure.org/blog/faq/can-i-withdraw-from-the-adpkd-registry-at-any-time/) - Yes, participation in the Registry is entirely voluntary. You can choose to withdraw at any time without any obligation. Simply contact the PKD Foundation to request withdrawal and your information will be promptly removed from the Registry. - [What are the benefits of joining the ADPKD Registry?](https://pkdcure.org/blog/faq/what-are-the-benefits-of-joining-the-adpkd-registry/) - By joining the ADPKD Registry, you become part of a community dedicated to advancing PKD research and improving patient care. You gain access to the latest information we’re learning in the Registry and valuable resources, like the Personal Impact Calendar and Care Summary, that you can share with your healthcare team to inform your care - [Is my information in the ADPKD Registry kept confidential?](https://pkdcure.org/blog/faq/is-my-information-in-the-adpkd-registry-kept-confidential/) - Yes, protecting the privacy and confidentiality of Registry participants is of utmost importance. The PKD Foundation adheres to strict privacy protocols and guidelines to ensure that all information collected is securely stored and only accessible to authorized personnel for research purposes. - [What information is collected in the ADPKD Registry?](https://pkdcure.org/blog/faq/what-information-is-collected-in-the-adpkd-registry/) - The Registry collects a wide range of information, including demographic data, medical history, PKD symptoms, genetic information (if available), and details about past and current treatments. This information helps researchers gain insights into the disease’s progression, treatment outcomes, and potential risk factors. - [How do I join the ADPKD Registry?](https://pkdcure.org/blog/faq/how-do-i-join-the-adpkd-registry/) - It’s secure and easy to participate in the ADPKD Registry. After visiting the PKD Foundation’s website, joining the Registry involves three steps: Create an online account Agree to an informed consent Complete the core questionnaire This can all be done online and from the comfort of your own home on your computer, tablet, or mobile - [Who can join the ADPKD Registry?](https://pkdcure.org/blog/faq/who-can-join-the-adpkd-registry/) - U.S. residents of all ages with a diagnosis of autosomal dominant polycystic kidney disease (ADPKD) are invited to join the Registry. Patients under the age of 18 may also join with the assistance (assent) of a parent or legal guardian. If you do not have an official diagnosis but have a family history and suspect - [What is the ADPKD Registry?](https://pkdcure.org/blog/faq/what-is-the-adpkd-registry/) - The ADPKD Registry is a collection of individuals with autosomal dominant polycystic kidney disease (ADPKD). The purpose of the Registry is to create a patient network that includes at least 5,000 people with ADPKD who contribute data on their health and other topics. This data will inform new research to improve ADPKD patient outcomes, learn - [Where can I find additional support and resources for living with PKD?](https://pkdcure.org/blog/faq/where-can-i-find-additional-support-and-resources-for-living-with-pkd/) - There are numerous resources available for individuals living with PKD, including support groups, educational materials, online forums, and organizations such as the PKD Foundation. Through our website, you’ll find educational blogs, webinars, and more to help you better understand PKD. Our local PKD Communities, PKD Connect Peer Mentors, and HOPE Line can connect you with - [Can I still have children if I have PKD?](https://pkdcure.org/blog/faq/can-i-still-have-children-if-i-have-pkd/) - Yes, many individuals with PKD can still have children. However, it’s essential to discuss family planning with your healthcare provider, as there may be genetic implications to consider. Genetic counseling can provide valuable information about the risk of passing PKD to future generations and options for family planning. - [Are there any dietary restrictions I should follow with PKD?](https://pkdcure.org/blog/faq/are-there-any-dietary-restrictions-i-should-follow-with-pkd/) - While there are no specific dietary restrictions for PKD, it’s generally recommended to follow a balanced diet low in sodium and high in fruits, vegetables, and whole grains. Limiting caffeine and protein intake may also be beneficial in managing certain symptoms. - [How can I manage the pain associated with PKD cysts?](https://pkdcure.org/blog/faq/how-can-i-manage-the-pain-associated-with-pkd-cysts/) - Pain management strategies for PKD may include over-the-counter or prescription pain medications, heat therapy, gentle exercise, relaxation techniques, and in some cases, procedures such as cyst drainage or surgery to reduce cyst size and alleviate discomfort. - [What are some common symptoms of PKD that I should watch out for?](https://pkdcure.org/blog/faq/what-are-some-common-symptoms-of-pkd-that-i-should-watch-out-for/) - Common symptoms of PKD include abdominal or flank pain, high blood pressure, blood in the urine, frequent urinary tract infections, kidney stones, and kidney enlargement. However, it’s important to note that some individuals may experience no symptoms, especially in the early stages of the disease. - [Can PKD affect other organs besides the kidneys?](https://pkdcure.org/blog/faq/can-pkd-affect-other-organs-besides-the-kidneys/) - Yes, while PKD primarily affects the kidneys, it can also impact other organs, such as the liver, pancreas, and blood vessels. It’s essential to work closely with your healthcare provider to monitor any potential complications and manage them promptly. - [How often should I have my kidney function checked?](https://pkdcure.org/blog/faq/how-often-should-i-have-my-kidney-function-checked/) - It’s essential to have regular monitoring of your kidney function, typically through blood tests and urine tests. Your healthcare provider will determine the frequency of these tests based on your individual health status and the progression of your PKD. - [What lifestyle changes can I make to manage PKD effectively?](https://pkdcure.org/blog/faq/what-lifestyle-changes-can-i-make-to-manage-pkd-effectively/) - Adopting a healthy lifestyle is crucial in managing PKD. This includes maintaining a balanced diet low in sodium, staying hydrated, exercising regularly, avoiding smoking and excessive alcohol consumption, managing stress, and getting regular check-ups with your healthcare provider. - [Can PKD be passed down to my children?](https://pkdcure.org/blog/faq/can-pkd-be-passed-down-to-my-children/) - Yes, PKD is a genetic disorder and can be passed down from parent to child. If you have PKD, there is a chance that your children may inherit the condition. Genetic counseling can provide valuable information about the risk of passing PKD to future generations and options for family planning. - [How can I manage my PKD symptoms and improve my overall health?](https://pkdcure.org/blog/faq/how-can-i-manage-my-pkd-symptoms-and-improve-my-overall-health/) - Managing PKD involves adopting a healthy lifestyle, including regular exercise, maintaining a balanced diet (low in sodium and high in fruits and vegetables), staying hydrated, avoiding smoking and excessive alcohol consumption, and managing stress. It’s also important to work closely with your healthcare team to monitor your kidney function and address any complications promptly. - [What treatments are available for PKD?](https://pkdcure.org/blog/faq/what-treatments-are-available-for-pkd/) - While there is currently no cure for PKD, treatments focus on managing symptoms and complications to improve quality of life. This may include medications to control blood pressure, pain management techniques, dietary changes, delay cyst growth, and in some cases, surgical interventions such as cyst drainage or kidney transplantation. - [How is PKD diagnosed?](https://pkdcure.org/blog/faq/how-is-pkd-diagnosed/) - PKD is often diagnosed through imaging tests, such as an ultrasound, MRI, or CT scans, which can detect the presence of cysts in the kidneys. Genetic testing may also be conducted to confirm a diagnosis, especially in cases where there is a family history of PKD. - [What are the common symptoms of PKD?](https://pkdcure.org/blog/faq/what-are-the-common-symptoms-of-pkd/) - Common symptoms of PKD include abdominal or flank pain, high blood pressure, blood in the urine, frequent urinary tract infections, kidney stones, and kidney enlargement. However, symptoms can vary greatly person to person. - [How can I stay informed about the progress of PKD research and the impact of my donation?](https://pkdcure.org/blog/faq/how-can-i-stay-informed-about-the-progress-of-pkd-research-and-the-impact-of-my-donation/) - We provide regular updates and communications to our donors, keeping you informed about the latest advancements in PKD research, patient stories, and how your support is making a difference. You can also visit our website and follow us on social media for ongoing updates and opportunities to engage with our community. - [Are there other ways to support the PKD Foundation besides monetary donations?](https://pkdcure.org/blog/faq/are-there-other-ways-to-support-the-pkd-foundation-besides-monetary-donations/) - Yes. In addition to financial contributions, you can support the PKD Foundation by volunteering your time, participating in fundraising events, advocating for kidney health legislation, and spreading the word about our mission within your community and online networks. - [Can I donate in honor or memory of a loved one affected by PKD?](https://pkdcure.org/blog/faq/can-i-donate-in-honor-or-memory-of-a-loved-one-affected-by-pkd/) - Absolutely. Many donors choose to make their contribution in honor or memory of a friend or family member impacted by PKD. Your donation can serve as a meaningful tribute while also supporting our efforts to improve the lives of those affected by this disease. Through an online donation, you can even have an email sent - [How much of my donation goes to research and patient support?](https://pkdcure.org/blog/faq/how-much-of-my-donation-goes-to-research-and-patient-support/) - We are committed to ensuring that the maximum amount of your donation directly supports research initiatives and patient support services. Our organization operates with transparency and accountability, allocating funds responsibly to advance our mission effectively. - [Can PKD be cured?](https://pkdcure.org/blog/faq/can-pkd-be-cured/) - While there is currently no cure for PKD, ongoing research is making significant strides toward finding effective treatments and ultimately a cure. Your contribution plays a vital role in accelerating this progress. - [How does my donation help those with PKD?](https://pkdcure.org/blog/faq/how-does-my-donation-help-those-with-pkd/) - Your donation fuels critical research efforts aimed at understanding the underlying mechanisms of PKD, developing effective treatments, and ultimately finding a cure. Additionally, your support enables us to provide essential resources and support services to individuals and families affected by PKD. ## Voices - [Adrienne Montgomery](https://pkdcure.org/blog/voice/adrienne-montgomery/) - I was diagnosed when I was 26, and by accident. When I went to the ER for shortness of breath, it ended up being hypertension. I had to get a CT, and by chance, there were cystic kidneys. I have no family history of PKD. I remember looking PKD up online and my mom sent - [Kay Gilbert](https://pkdcure.org/blog/voice/kay-gilbert/) - When my life partner told me that he had PKD, I said he could have one of my kidneys. He had no family history of PKD, and neither of us knew anything about it, so the first thing we did was get involved with the PKD Foundation. Many years passed before he was ready for - [Shari Roten](https://pkdcure.org/blog/voice/shari-roten/) - For my family, PKD has been part of our story for generations: My grandmother lost her life to PKD in 1946. My dad passed in 1963 from a brain aneurysm, a complication of weakened blood vessels linked to PKD. My brother received a transplant in 1996 and has defied the odds, living decades beyond the - [Scott Correa](https://pkdcure.org/blog/voice/scott-correa/) - I received the gift of life on August 21, 2024. In 2014, I was diagnosed with PKD and joined the transplant list in 2021. It was the selfless act of a friend, who donated on my behalf, and a paired exchange through the National Kidney Registry, that made this possible. I encourage all of you - [Nouf AlDossari](https://pkdcure.org/blog/voice/nouf-aldossari/) - When I was a baby, I was diagnosed with autosomal recessive polycystic kidney disease (ARPKD), a rare condition that affects my kidneys and liver. It was a challenging time for my family and me, and it changed our lives profoundly. In 2002, my condition led to the need for a kidney and liver transplant. That - [Steven Watson](https://pkdcure.org/blog/voice/steven-watson/) - I was born with PKD. I inherited the disease along with my younger brother, David, from our father. My dad had two successful kidney transplants, the later was during Thanksgiving 2015. I've been on dialysis since March of 2020, and I travel an hour from home three days a week for the lifesaving treatment. Sadly, - [Martha Gallegos](https://pkdcure.org/blog/voice/martha-gallegos/) - I’m 63 yrs old and I was diagnosed with PKD at the age of 45. I received a successful kidney transplant in October 2020 and have been doing very well since then. Living with this disease has taught me to always feel grateful. I always face each day with the mindset that I control this - [Cathy Podgers](https://pkdcure.org/blog/voice/cathy-podgers/) - I just passed the two-year mark (August 14) for my kidney transplant. My sister and I had one on the same day at Hamot Hospital in Erie, Pennsylvania. She was number 99 and I was number 100. My sister received a kidney from her daughter and I received a kidney from an unknown donor. I - [Kaylann Ryan](https://pkdcure.org/blog/voice/kaylann-ryan/) - I am 38 years old and in stage 3 ADPKD. Three previous generations of my family also struggled with PKD (Papa Shorty, Nana, and my mom). None of them are with us anymore, but they taught me so much about how I will battle this disease and how to be an example to my twin - [John Burns](https://pkdcure.org/blog/voice/john-burns/) - My name is John Burns. I’m 58 years old, and I was diagnosed with ADPKD when I was 43. No one else in my immediate family has the disease. I had a cerebral aneurysm rupture out of the blue which led to the diagnosis. I hadn’t heard of the disease before and I remember asking - [Trish Kaiser](https://pkdcure.org/blog/voice/trish-kaiser/) - My name is Trish Kaiser and my ADPKD diagnosis came in Fall 1999, just a few months before my eighth birthday. I still remember my mom taking my older brother and I to renal ultrasounds one day before school. My brother knew something was different when mine took longer. Our parents took me to pediatric - [Rob Visda](https://pkdcure.org/blog/voice/rob-visda/) - My husband’s name is Rob Visda. When he was diagnosed with PKD at 18, he was going through the process of enlisting in the Marines. He inherited the disease from his mom’s side of the family. Because of his diagnosis of PKD, he was not accepted into the service. Finding this out did not defeat - [Dawn Glover](https://pkdcure.org/blog/voice/dawn-glover/) - My name is Dawn Glover and my dad died in 1970 of a ruptured brain aneurysm associated with PKD. He was only 34. I’m 64 and I was diagnosed in 1991 at the age of 34. My progression has been relatively slow, but my GFR is at 18 now so I’m beginning to notice a - [Tracey Looney](https://pkdcure.org/blog/voice/tracey-looney/) - My name is Tracey Looney and I was in my early 20s when I was diagnosed with ADPKD. I'm now 47. PKD was passed down on my maternal side of the family. My grandmother died in 1988 at the age of 58. My mother died in 2008 at the age of 62 after a long - [Paige Donna Myers](https://pkdcure.org/blog/voice/paige-donna-myers/) - My name is Paige Donna Myers and I was diagnosed with PKD in 1993—I'd never heard of PKD ever! I come from The Republic of Trinidad and Tobago. I started having kidney infections at the age of 19 that continued into my 20s. I was at a concert enjoying myself when I started to have - [Robbie McCafferty](https://pkdcure.org/blog/voice/robbie-mccafferty/) - My name is Robbie McCafferty. I’m 30 years old and I found out I had PKD in my early 20s. I'd been having sharp pains in my side for months. After finally reaching a breaking point at work, I went to the ER. The attending physician noted abnormal scans of my kidneys. Upon further medical - [Jennifer Shareef](https://pkdcure.org/blog/voice/jennifer-shareef/) - My name is Jenn and I was in my teens when I was diagnosed with ADPKD. My mother had renal failure and was placed on dialysis. My brother was tested to see if he was a match to donate a kidney. We found out he too had PKD, and so my mom had me tested - [Denise Schmidt](https://pkdcure.org/blog/voice/denise-schmidt/) - My name is Denise Schmidt and I'm a transplant recipient. PKD runs in my family. My mom had it along with her sister, and my two adult sons have it (both are on dialysis). They're both getting tested to be added to the transplant list. My cousin had a transplant and his sister is also - [Megan Jones](https://pkdcure.org/blog/voice/megan-jones/) - My name is Megan and I was born with PKD. In 1992 it was unheard of in my hometown. Doctors told my mom I wouldn’t make it to the age of 2. When I was 6 months old, they finally had a diagnosis—PKD. I needed a right nephrectomy, for which I'd have to be at - [Vanessa Nieves](https://pkdcure.org/blog/voice/vanessa-nieves/) - My name is Vanessa, and I’m 32 years old. I come from a long line of PKD survivors. My maternal grandfather was on dialysis for several years before passing away in the '70s. At the time, they didn’t know it was PKD or anything hereditary. My mother and uncle went decades without knowing they carried - [Heidi Hammond](https://pkdcure.org/blog/voice/heidi-hammond/) - My name is Heidi and I found out that I had PKD at the age of 18 when I had appendicitis—only months after my dad discovered he had PKD and received a kidney transplant. He was the "mutant" and the first generation to get it in our family. For the last 12 years, it's been - [Greg Zollner](https://pkdcure.org/blog/voice/greg-zollner/) - My name is Greg Zollner and I was a nephrologist for 25 years. Twenty years ago, I diagnosed myself with polycystic kidney disease, during a routine demonstration of an ultrasound machine. I'm aware of the irony of a kidney doctor getting kidney disease, but I've since seen many doctors get the illness they specialize in - [Michelle Leigh Watson](https://pkdcure.org/blog/voice/michelle-leigh-watson/) - My name is Michelle Leigh Watson, and I was diagnosed with Polycystic Kidney Disease at 33. My father died from PKD at the age of 47. His mother, two of his sisters, and three of my cousins have died from this disease. Two of my living siblings are also diagnosed. Some of my family had - [Patricia Mittlestadt](https://pkdcure.org/blog/voice/patricia-mittlestadt/) - My name is Patricia Mittlestadt and I am 65 years young and on the kidney transplant waiting list. My dream is to receive a kidney before I go on dialysis, which is around the corner. I keep going from stage 4, to stage 5, then back to stage 4. One of the hardest parts of - [Caryn Becker](https://pkdcure.org/blog/voice/caryn-becker/) - My name is Caryn Becker and when I was a teenager, I found out my dad had ADPKD. He let his kidney function drop until his creatinine was 14! He was very sick and eventually went on dialysis. My dad received a kidney transplant a year later. We were so excited! The transplant allowed my - [Jane Brann](https://pkdcure.org/blog/voice/jane-brann/) - My name is Jane. My father, whose PKD was a “mutation,” died at the age of 35, before either dialysis or transplants were developed. I was diagnosed with PKD at the age of 22. I closely watched my diet and blood pressure until the age of 52 when one of my unaffected sisters donated a - [Brian Buenaventura](https://pkdcure.org/blog/voice/brian-buenaventura/) - I’ve been struggling with this disease for 10 years already after being diagnosed in early 2012. I continued my life, but in 2018 my labs hit high so I started dieting extremely and exercise regularly. It’s really hard to beat this disease. I’ve gone in and out of the hospital and now I'm on dialysis - [Robert Attebery](https://pkdcure.org/blog/voice/robert-attebery/) - My name is Robert Attebery and I’m a 60-year-old enrolled member of the Karuk tribe in Northern California. I was diagnosed with PKD a few years back. My mother died at 75 of a burst aneurysm from complications of PKD. I’m at stage 3 right now operating at about a 40% GFR. I am our - [Karen Dellinger](https://pkdcure.org/blog/voice/karen-dellinger/) - My name is Karen Dellinger and my father had PKD. So we, his children, decided to be tested to possibly give him a kidney. It was then we found that my older sister had the same disease, as it's hereditary. Once my father found out one of his children had PKD, he refused to accept - [Maggie Sessler](https://pkdcure.org/blog/voice/maggie-sessler/) - My name is Maggie Sessler and my husband, Mike, and I have been together for 21 years. Mike was diagnosed with PKD at the age of 25. His dad, Keith, passed away in 2007 from a stroke awaiting his second kidney transplant. I donated my love a kidney 11 years ago. The doctors were amazed - [Dawn Gignac](https://pkdcure.org/blog/voice/dawn-gignac/) - My name is Dawn Gignac and I recently found out that I have PKD. My brother had it and it came from our dad. My two nieces have it and two of their children also have it. I was so scared when I found out. I talked to my niece and felt better when she - [Jan Maxwell](https://pkdcure.org/blog/voice/jan-maxwell/) - My name is Jan Maxwell and all of my father's children inherited PKD. My father died at age 43 because there was so little progress regarding surviving on dialysis. Kidney transplants weren’t yet an option. My sister, Susan, received her new kidney from an altruistic donor within a year of being told to start looking. - [Stephanie Blumenthal](https://pkdcure.org/blog/voice/stephanie-blumenthal/) - My name is Stephanie Blumenthal. When my creatinine started to go way up, my family and I began our search for a kidney. Some friends came forward and offered to be a donor, others included my need at the bottom of their email. My husband was friends with a journalist who published it on their - [Dawn Glover](https://pkdcure.org/blog/voice/dawn-glover-2/) - My name is Dawn Glover. My father died of a ruptured brain aneurysm associated with PKD when he was only 34 years old. I was diagnosed in my early 30s, after being hospitalized for an abscessed cyst. I'm now 65 and on dialysis. I’ve been waitlisted for a kidney for five years and might still - [Nica Lorber](https://pkdcure.org/blog/voice/nica-lorber/) - I am Nica Lorber, almost everyone on my Dad's side of my family has PKD. My grandma and aunt died from it. My dad, other aunt, and cousin have all had transplants. At 47, my PKD hasn't progressed too bad, but I know a transplant may be something to consider in my future. I learned - [Simone Molter](https://pkdcure.org/blog/voice/simone-molter/) - I'm Simone Molter and I live in Hamburg, Germany. Since I was a child, I’ve known that I have ADPKD. My father did hemodialysis at home and did his best to show us that having ADPKD isn’t a reason to stay at home. Every year I write down some challenges and goals for my life - [Rachel Hurford](https://pkdcure.org/blog/voice/rachel-hurford/) - My name is Rachel Hurford and PKD has affected my family for as long as I can remember. My grandad had PKD, and though my grandma donated her kidney to him, he still suffered complications after the donation and sadly passed away. My dad was also diagnosed with PKD. For many years, this didn’t affect - [Greg Schulmeister](https://pkdcure.org/blog/voice/greg-schulmeister/) - It's been a year since my kidney transplant— and wow, what a difference a year can make. It's nice being able to enjoy life again, even the little things are enjoyable. Before my transplant, I had pain every day and wondered if I was going to be able to do much of anything. When I - [Jeannie Brown](https://pkdcure.org/blog/voice/jeannie-brown/) - I am Jeannie Brown and I was diagnosed at 21 with PKD. There are six generations on my maternal side who’ve had or currently have this disease. I grew up educated in what PKD was and what the future may hold for me. I always felt lucky that I knew so much and at the - [Patsy Parkin](https://pkdcure.org/blog/voice/patsy-parkin/) - My sons, Donald, David, and Daniel were born on June 21, 1978. They’re perhaps the largest triplets born in the U.S. (a total of 22 lbs., 22 oz., or 23 lbs., 6 oz)—larger than the current record holders in the Guinness Book of Records. Their grandfather, Loyal Parkin, their father, Don, and three of his - [Ro Felicia](https://pkdcure.org/blog/voice/ro-felicia/) - I went undiagnosed my whole life until I started checking my health records. I felt as if my body was breaking down. My health records showed my kidney function had declined—it had been declining for years. No doctor ever told me that something was wrong with my kidneys. I realized something was wrong. I switched - [Delilah Rivera](https://pkdcure.org/blog/voice/delilah-rivera/) - I walk for polycystic kidney disease (PKD) because it’s profoundly affected my family. I walk for my dad, my cousins (Wanda and Nana), and my uncle (Junior), all of whom have battled the challenges of this disease. I also walk for myself because I believe in a better future and a cure for PKD. By - [Paolo Ramirez](https://pkdcure.org/blog/voice/paolo-ramirez/) - On February 15, 2024, a day after Valentine's Day, I received the gift of love and life: live organ transplant, a kidney. Thanks to God and the unconditional love of my lovely wife and soul mate, Isa, who without the slighted hesitation said, "My kidney is for you!" Nine months ago, the race started, and - [Sara DornBrook](https://pkdcure.org/blog/voice/sara-dornbrook/) - My husband, Miles, and I met when we were just teenagers and had family members suffering from PKD. We knew quite a bit about the disease. When he was 23, he went to the doctor for allergy issues, and they discovered that he had high blood pressure. At 23, that is uncommon. He knew instantly - [Merari Agiular](https://pkdcure.org/blog/voice/merari-agiular/) - I’m 25 years old and I was diagnosed with PKD in March 2024. PKD runs in my family: my grandfather passed away from it, my dad has it, and most of my paternal aunts have it as well. The week of my diagnosis I was severely depressed and scared since I’ve watched family members pass - [Mike Reposa](https://pkdcure.org/blog/voice/mike-reposa/) - PKD has affected my family for generations. My father was diagnosed in his early 30s and eventually went on dialysis at age 50. He did dialysis for about a year before having a transplant. Sadly, he died young from stroke complications, the day before his 60th birthday. I have three brothers and a sister, all - [Courtney Josephson](https://pkdcure.org/blog/voice/courtney-josephson/) - Before my diagnosis, I was a healthy 20-year-old. My only problems were balancing college and part-time work. I’d just finished my last semester of college when I began feeling ill. A serious kidney infection had been brewing and I had no idea. I checked myself into the emergency department two days before graduation. The radiologist - [Shery Fogel](https://pkdcure.org/blog/voice/shery-fogel/) - I turned 40 and seven days later I was on dialysis. I didn't know I had PKD until one day I went to see my primary care physician about a headache. She did labs, called me while I was walking in Wal-Mart, and said I needed to redo the labs because my numbers were crazy. - [Avril Somervile](https://pkdcure.org/blog/voice/avril-somervile/) - I walk for my beloved twin sister, Sheryl (Shay) Letang. After coming down with flu-like symptoms (possibly COVID), she succumbed to renal failure on April 8, 2020. Sheryl was diagnosed with PKD shortly after having her daughter and received a kidney after four years of dialysis. Unfortunately, the kidney began to fail months before her - [Lee Casati](https://pkdcure.org/blog/voice/lee-casati/) - I was diagnosed at 25 years old. I was managing high blood pressure, but also experienced back problems and kidney stones. After extensive testing, a nephrologist diagnosed me with PKD. Thanks to medication, I lived a normal life as a father, husband, insurance broker, and little league coach for decades. At 63, my glomerular filtration - [Frances Silva](https://pkdcure.org/blog/voice/frances-silva/) - I walk for PKD because I want to do my part to help fight and put an end to PKD. I also want to raise awareness of this little know disease. My own personal story began in 1997. When my family doctor ran a CT scan, multiple cysts were found on both my kidneys. I - [Steve Baum](https://pkdcure.org/blog/voice/steve-baum/) - We’ve been active with the PKD Foundation for the last 13+ years since my PKD/PLD double transplant. The Foundation has been especially helpful to my younger siblings with its research and information. - [Shaunna Butler](https://pkdcure.org/blog/voice/shaunna-butler/) - At 28 weeks pregnant with my son, Rayne, I lost all amniotic fluid. Between hospital visits and bedrest, I delivered him at 33 weeks. He spent the next nine weeks in the NICU—three of those weeks he was intubated. We weren’t sure that he was going to make it. At the time, his kidneys weren’t - [Lisa Baxter](https://pkdcure.org/blog/voice/lisa-baxter/) - I got PKD from my father. I have six siblings on dialysis, two aunts, an uncle, and a mother-in-law. I travel all around the world sharing my story and giving out resources that can help others with this journey. After 12 years of dialysis, I received a kidney that I call, “Hannah.” Through the PKD - [Angela Culp](https://pkdcure.org/blog/voice/angela-culp/) - I was diagnosed with PKD at age 30; the fourth generation in my family. My father and grandmother were on dialysis for many years. My great grandmother had PKD, and without access to dialysis, passed away at age 43. I was the same age when I had kidney failure and needed to begin dialysis. Dialysis - [Sue Full](https://pkdcure.org/blog/voice/sue-full/) - Sue Full Sue Full talks about the honor of supporting her long-time friend, Nicole Harr. Sue became involved with the PKD Foundation after she found out Nicole had been diagnosed with polycystic kidney disease (PKD). - [Jennifer Tompkins Kirshenbaum amplifies voices of those living with PKD by particpating in an in-district meeting](https://pkdcure.org/blog/voice/jennifer-tompkins-kirshenbaum-amplifies-voices-of-those-living-with-pkd-by-particpating-in-an-in-district-meeting/) - During the legislative year, the PKD Foundation sends alerts of when to contact our senators and congress representatives to vote for specific bills. I would always send an e-mail to my Senators and Senator Deb Fischer would always respond. At the PKD Foundation Conference in June 2016, Karen Thurber, former Florida Representative, encouraged us to - [Nick Attanasio](https://pkdcure.org/blog/voice/nick-attanasio/) - My name is Nick Attanasio. I'm 42 and I have stage 4 ARPKD. I was diagnosed when I was 14 after my father had his first kidney removed. They were monitoring his blood pressure after surgery and decided to test mine. When it kept coming back high, I was diagnosed with PKD. Since diagnosis, I've - [Jean Sommer](https://pkdcure.org/blog/voice/jean-sommer/) - I was diagnosed with PKD and PLD in 2001, and three months later my sister was diagnosed. My sister, brother, and I inherited PKD from our mother, who never knew she had PKD. She died from complications after brain aneurysm surgery in 1986. Polycystic liver disease (PLD) is a complication of PKD which severely impacted - [Lauren Thompson](https://pkdcure.org/blog/voice/lauren-thompson/) - I was diagnosed in 2019 as I was turning 27. I was feeling really tired all of the time. I thought it might be work and burn out, but requested a blood test by the GP. My bloods showed reduced function of my gfr, a later ultrasound confirmed my diagnosis of PKD. I was devastated, - [Stephanie Fehrmann](https://pkdcure.org/blog/voice/stephanie-fehrmann/) - I was diagnosed with PKD when I was 7 or 8 after my dad was diagnosed with PKD. Being diagnosed so young was strange because I didn't really understand what it meant. Now I do. As a young adult, I always tried to be healthy. I ate lots of kale and always got my full - [Haley McNamara](https://pkdcure.org/blog/voice/haley-mcnamara/) - My name is Haley McNamara and I'm a 28 year-old Southern California native currently working in the sports industry at Major League Soccer. I recently moved back to California after being in NYC for five years when my PKD took a downhill turn. I was diagnosed with ADPKD before birth—doctors could see cysts forming on - [Karen Kessler](https://pkdcure.org/blog/voice/karen-kessler/) - I inherited my PKD from my father’s side of the family. My grandfather died of kidney failure in his late 30’s when my father was about 19 years old. My father was diagnosed young, and his kidneys failed at age 38 when he began hemodialysis. Growing up, my sisters and I knew all about PKD - [Alyssia Gomez](https://pkdcure.org/blog/voice/alyssia-gomez/) - My name is Alyssia and I was diagnosed with PKD at the age of 20. My diagnosis came when I was serving in the US Army Reserves and I had an unexplained abdominal pain during our exercise. I'd became very discouraged but in the last four to five years since diagnosis, I’ve tried to stay - [Janice Lucas](https://pkdcure.org/blog/voice/janice-lucas/) - My aunt was diagnosed in the early '70s and the hospital in Seattle asked my cousins and siblings to get tested. I was eight months pregnant at the time and I couldn't travel to participate. My aunt and my dad were the only two siblings of five who had the disease, and only two cousins - [Paulette Meaney](https://pkdcure.org/blog/voice/paulette-meaney/) - My husband was diagnosed with PKD in 2008. His kidney function declined significantly over the years, and in June 2020 he was referred for a transplant. Thank God I was a great kidney match. I was able to donate my kidney to him on November 11, 2020, before he ever needed dialysis! No more exhaustion, - [Lainie E.](https://pkdcure.org/blog/voice/lainie-e/) - I represent the third generation of ADPKD in my family—I was diagnosed in my early 20s. Those in my family who are no longer with us, passed away due to complications of the disease, but my father received the first transplant in our family four years ago. He’s doing well. Although I’ve experienced recurring kidney - [Kaylee Gunn](https://pkdcure.org/blog/voice/kaylee-gunn/) - When I was 32 weeks pregnant with my first child, we found out he had cystic kidneys. We were told to expect the worst. If he lived through birth, he may not have fully developed lungs. He may need dialysis immediately. He may need a transplant in the first year. Our son is now five, - [Ashlee Olando](https://pkdcure.org/blog/voice/ashlee-olando/) - We found out that my unborn daughter had a cyst in her right kidney. It was then that they questioned who she’d received it from, and we discovered that my husband had ADPKD. He was never screened for it even though his mother is Stage 3 ADPKD, and his sister is Stage 1 ADPKD. My - [Rachel Homewood and Bennett Homewood](https://pkdcure.org/blog/voice/rachel-homewood-and-bennett-homewood/) - My two-year old son, Bennett, was unexpectedly born with ARPKD. It’s been a long journey so far. NICU stay, surgery, meds, blood draws, blood pressure checks, and many doctor appointments. Despite everything he’s gone through and will continue to go through, this little guy continues inspiring those around him with his enthusiasm for life. I’m - [Corey Morgan](https://pkdcure.org/blog/voice/corey-morgan/) - I found out I had PKD when I was seven weeks pregnant with my daughter. It wasn't the best news—and then I found out my unborn child could also have PKD. After she was born, we ran tests and it confirmed that she and I share the same disease. It was hard to swallow, but - [Holly Blaine](https://pkdcure.org/blog/voice/holly-blaine/) - I found out I had PKD in October 2015 when I was 29 years old. I was going to become a living donor for my father who also has PKD. I had an initial ultrasound, and followed up with my doctor. She then informed me that I also have PKD. I was devastated just knowing - [Greta Ellis](https://pkdcure.org/blog/voice/greta-ellis/) - My father died at age 39—I was only 13 years old. We were unaware he had PKD until after his death. Looking back, he had all the outward signs (large belly, high blood pressure). I began having problems with constant kidney infections during my thirties. I still vividly remember the almost unbearable back pain. I - [John Ventresca](https://pkdcure.org/blog/voice/john-ventresca/) - Several years after I was diagnosed was when I started to feel the effects of PKD. The first issue I noticed was fatigue, and also over time, I noticed more and more back pain. In the afternoon I would notice getting a little drowsy and I would attribute feeling a little run down to just - [David Birkley](https://pkdcure.org/blog/voice/david-birkley/) - It was the year 2000. A longtime friend of mine noticed that I had sudden weight loss and recommended that I go see a doctor, which I did. My mother had PKD, and I felt it was a good time to get checked. Through testing they found, via ultrasound, that I had had PKD, and - [Kate Williams](https://pkdcure.org/blog/voice/kate-williams/) - My name’s Kate. I have PKD, and my son, Owen, has PKD. So, finding out that first day, everything was really kind of a blur. Our doctor explained what PKD was and then said please don't go home and Google this, because there’s a lot of information, and most of it is really scary. We - [Samuel Spencer](https://pkdcure.org/blog/voice/samuel-spencer/) - I was 12 when I was diagnosed with PKD. It turns out my genes mutated, so I'm the only one in my family with the disease. Today, I'm 28. I didn't really think much about the disease until this year when I started taking tolvaptan. Now that I'm married with a one-year-old at home, I - [Diana Hartley](https://pkdcure.org/blog/voice/diana-hartley/) - My husband, Tim, was diagnosed in 2002. In March of 2018, he was eligible to begin the transplant process. He was placed on the list about a year ago and received his new kidney from a living donor on August 19, 2019. Luckily, he never had to start dialysis. Now just a little over two - [Jan Elf](https://pkdcure.org/blog/voice/jan-elf/) - I was diagnosed with PKD when I was 40. My sister was also diagnosed near that time. She was six years older than me. She died five years ago from a stroke. I began dialysis when I was 59, I'm 61 now, and I've been on a transplant list for two years. My oldest daughter, - [Darlene Vandenbergh](https://pkdcure.org/blog/voice/darlene-vandenbergh/) - My father was diagnosed with PKD in the 1990s when the only thing we knew about PKD was cysts on kidneys, dialysis, kidney transplant, that it was hereditary and that it affected many organs in the body. My dad lost his battle with PKD in 2001 after being on dialysis for five years. One of - [Amber-lee Kate Petersen](https://pkdcure.org/blog/voice/amber-lee-kate-petersen/) - My name is Amber-lee Kate Petersen, 18 years old, and I live in South Africa. In my final year of high school, I fell incredibly ill. I experienced excruciating pain in my abdomen area. I was kept in a hospital for more than two days, and to be frank, the pain was gone, and I - [Christopher Nuzzo](https://pkdcure.org/blog/voice/christopher-nuzzo/) - My name is Christopher and I have polycystic kidney disease. I am 20 years old and go to school at Manhattan College to study media production. I always knew my family had a history with PKD because my grandmother had gotten a successful transplant years before. My grandma has always been so strong and has - [Jerry Petersheim](https://pkdcure.org/blog/voice/jerry-petersheim/) - PKD started with my grandfather, who died from the disease at the age of 49. He and my grandmother had twelve children, of whom six had PKD. Three aunts died around the age of 50 without the availability of dialysis. A fourth aunt was on hemodialysis for about 20 years. A fifth aunt had two - [Tilia Sanchez](https://pkdcure.org/blog/voice/tilia-sanchez/) - My name is Tilia, and I have Stage 5 PKD. I was diagnosed when I was about 13 years old and did not know I would be at this stage of my disease at this age. My life consists of many, many doctor visits, unexpected hospitalizations. I've had many blood transfusions and lost days with - [Mike Balles](https://pkdcure.org/blog/voice/mike-balles/) - I was diagnosed with ADPKD at thirty-five. While my mom knew her siblings had kidney issues, she thought she did not, since she had no symptoms. It took twenty years for my kidney function to gradually decline. I had a few episodes of cysts popping and kidney stones, and a week’s hospitalization for pain, but - [Gregory Ofiara](https://pkdcure.org/blog/voice/gregory-ofiara/) - I have survived Polycystic Kidney Disease for nineteen years. Having family support has been critical to my health; my brother-in-law, a better match than my family, was my living donor. His kidney donation was the most meaningful gift I’ve ever received. I am a fourth generation Ofiara with PKD and the only one who has - [Kim March](https://pkdcure.org/blog/voice/kim-march/) - I was diagnosed with ADPKD at 15 years old following a snowmobiling accident that caused me to rupture a cyst. I am currently 31 years old, working as a firefighter/EMT and going to nursing school while working hard to raise my 10-year-old son. My family has an extensive history of PKD with my mom, aunt, - [Taylor Stearns](https://pkdcure.org/blog/voice/taylor-stearns/) - PKD has caused my family so much hardship. Growing up, I watched my mother suffer as her health declined. She was always in so much pain, never wanting to leave the house because she was so uncomfortable. Finally, at age 41 she was put on dialysis, and she was beginning to manage her symptoms better. About - [Reina Stevens](https://pkdcure.org/blog/voice/reina-stevens/) - PKD runs in my family. My grandmother ultimately passed as a result of complications with the disease. My mother was diagnosed but it was very well managed until 2006. Within 6 months her kidney function dropped to under 10%. Her best friend Carolyn offered to donate and they began the process together. She was a perfect - [Kristen Simms](https://pkdcure.org/blog/voice/kristen-simms/) - My name is Kristen Simms. I am a 26-year-old military wife living in Northern Virginia with two children affected by ARPKD: a four-year-old boy, Elijah and a one-year-old girl, Presley. With our firstborn son, Eli, we had no idea that he had PKD. It was found after birth and later diagnosed as ARPKD. This came as - [Nicole Cardin](https://pkdcure.org/blog/voice/nicole-cardin/) - My paternal grandmother, Helen, is the first that we know of who had autosomal dominant polycystic kidney disease (ADPKD) in the family. We only figured it out when others in the family started to get diagnosed and we realized that it must have been the cause of her kidney failure in her early 60’s. My - [Taylor Karlo](https://pkdcure.org/blog/voice/taylor-karlo/) - My name is Taylor Karlo, I’m 17 years old and I’m a senior at Olentangy Liberty High School in Powell, Ohio. I am also a volleyball player and I’m committed to the University of Saint Francis to continue my volleyball career. I live with my mom, Heather, my dad, Andy, my brother Brenden, and my - [Debra Dai](https://pkdcure.org/blog/voice/debra-dai/) - My name is Debra and I’m from New York. I was diagnosed at the age of 22 during my pregnancy with my first child. At the time, my mother had PKD and was going through a difficult time. She was on dialysis, received a transplant from a non-related donor and, unfortunately, her transplanted kidney failed - [JoAnn Villanueva](https://pkdcure.org/blog/voice/joann-villanueva/) - I write my PKD story on the 14th anniversary of my kidney transplant! I have two sisters, no brothers. I come from a LARGE Irish Catholic family (all raised in Chicago). Like other PKD families, many of my family members have been afflicted (five generations). My mother and my younger sister both had transplants. I - [Lisa Towler](https://pkdcure.org/blog/voice/lisa-towler/) - This month marks 26 years ago I found out I had PKD. It was the second week of my senior year of high school. I'm adopted and several years ago I found some information about my mother's family. A total of 5 members including myself have been diagnosed with PKD. I'm the only one alive - [Rob Herman](https://pkdcure.org/blog/voice/rob-herman/) - PKD runs in my my mom's side of the family. It has been devastating to us. My grandfather died from a major stroke caused by PKD. My mom had a major stroke that left her a vegetable at age 35 from PKD. She died at 50. My older sister recently died from a major stroke at age - [Cheryl Flothe](https://pkdcure.org/blog/voice/cheryl-flothe/) - PKD runs in my family through my maternal grandfather's side---he, his dad, sister, brothers and cousins had/have the disease. Most who came before died with no chance of dialysis or transplants. My mom and uncle died in their early 60s and my brother died in his early 50s. My sister and I both received transplants - [Glenna Frey](https://pkdcure.org/blog/voice/glenna-frey/) - I donated my kidney to a stranger April 2017. I have been a nephrology nurse for over 30 years and understand the challenges of living on dialysis. Also, my husband and daughter have polycystic kidney disease. My husband received a kidney transplant over 16 years ago from my niece, who was 20 at the time. - [Melissa Justice](https://pkdcure.org/blog/voice/melissa-justice/) - My daughter, Abigail Musser, was 86 days old when she passed away in July of 2017. She was a twin birth, born at 33 weeks. We found out about her diagnosis while I was 20 weeks pregnant and never expected that the worst in our lives was to come. She quickly lost amniotic fluid and - [Noelia Canfara](https://pkdcure.org/blog/voice/noelia-canfara/) - I was diagnosed with polycystic kidney and liver disease 17 years ago. Since then, I have had several surgeries both on my kidneys and liver to deroof cysts and alleviate symptoms, but my kidneys continued to grow and decline in function. On Nov. 1, 2016, my brother, the only one out of five siblings who - [Selina Borg](https://pkdcure.org/blog/voice/selina-borg/) - I am the fourth generation to be diagnosed with PKD in my family. I got my diagnosis in 2010 when I was 22. My dad, Roland, was diagnosed at the age of 42, and six months ago, at the age of 50, he got a kidney transplant! We were very grateful. Even though we have - [John Vallarelli](https://pkdcure.org/blog/voice/john-vallarelli/) - I was diagnosed in 1993. Initially hospitalized for diverticulitis, I had a CAT scan and the next morning, seven doctors showed up to my room and told me I have PKD. Was I shocked? No; surprised, yes. My mom had it, too, and was doing ok. Several weeks later, as my wife is pregnant with - [Renata Mendes](https://pkdcure.org/blog/voice/renata-mendes/) - I was diagnosed 10 years ago. I had low back pain for some weeks, so I went to emergency and they sent me to an orthopedist. After a few days taking orthopedist pills and still dealing with back pain, I went back to emergency after blood started appearing in my urine. In emergency they did - [Tracey Barbour](https://pkdcure.org/blog/voice/tracey-barbour/) - I found out I had PKD 10 years and 5 months ago, one month after I got married. A routine blood test showed I had a raised level of creatinine. I didn't even know what creatinine was. It was 1.8. They sent me for a 24 hour urinalysis, which led them to send me for - [Chris Dwyer](https://pkdcure.org/blog/voice/chris-dwyer/) - I found out last year by accident. I had an arthrogram done for a torn hip labrum. Two days later the orthopedic surgeon called and let me know that I had an extensive tear of the labrum and that they had also found a large mass in my abdomen. I was ordered to get a - [Skyla Tanner](https://pkdcure.org/blog/voice/skyla-tanner/) - I have a disease. I don’t like the way those words sound. So, I don’t speak of it often. In fact, many days I ignore it. Even when my body is screaming loud with signs and symptoms. It’s been 10 years since I was diagnosed. Adult onset, they call it. I was more than a - [Esmeralda Juarez](https://pkdcure.org/blog/voice/esmeralda-juarez/) - I've had PKD for over 13 years, but by God’s amazing grace I received a kidney transplant in 2006. I had to go through dialysis for three months. I've learned to live with it, but it's very hard for me to know that two of my children have it as well. I pray daily that - [Colleen Clark](https://pkdcure.org/blog/voice/colleen-clark/) - My husband was diagnosed with PKD in his mid-50s and we were sent to Emory University Hospital in Atlanta. Remarkably, his doctor was Arlene Chapman, a world-renown specialist and scientist. At that time, they only recommended that he cut back on protein. As the disease progressed, his kidneys became enlarged, his GFR dropped and he - [Brittany Russo](https://pkdcure.org/blog/voice/brittany-russo/) - We found out my daughter Savvy had ADPKD at the age of one. My husband also has ADPKD, as well as his father and sister. I was very frightened for Savvy and I still worry every day how this will affect her. She currently has hypertension, but her cysts and kidney function are stable. To - [Sherry Sbraccia](https://pkdcure.org/blog/voice/sherry-sbraccia/) - I am 39 years old, and up until recently, I never gave a second thought to my kidneys and had never heard of PKD. That all changed a couple of years ago. Me and my family were vacationing in Florida when my son came down with food poisoning. He was 12 at the time. We - [Cynthia Conway](https://pkdcure.org/blog/voice/cynthia-conway/) - I found out I had polycystic kidneys in 1995. I've been doing dialysis three times a week for five years. I have three grown children who also have PKD. My firstborn is 47 and his three kids also have the disease. I have three more grandchildren but I'm not sure if they have it or - [Margery Garcia](https://pkdcure.org/blog/voice/margery-garcia/) - I was born and raised in the Philippines. My mom and dad are both Filipinos. I moved to USA in 2008 to work as an occupational therapist. I work in pediatrics now but I used to work in a geriatric setting five years ago. I've met many people with kidney diseases, some with PKD. It - [Mark Simowitz](https://pkdcure.org/blog/voice/mark-simowitz/) - I am 58 years old and I am the first in my family to have PKD. I found out in 2005 while taking my college-age son to see his orthopedic doctor. I asked the doctor to look at my back since I was experiencing lower back pain. The doctor had me get an MRI and - [Amber Paxton](https://pkdcure.org/blog/voice/amber-paxton/) - I was diagnosed with ADPKD through ultrasound in September 2016 at age 22. My father had recently been diagnosed as well, following kidney issues, and his lack of a relationship with his father made him unaware of the disease. My grandfather lives on dialysis at 0% kidney function. My father and I are still at 100% function, - [Carol Soha](https://pkdcure.org/blog/voice/carol-soha/) - I am lucky when it comes to PKD. I didn't start to go into failure until my early 60s, and then before going into complete failure, I received a kidney from a living donor. This donor was John, my daughter's friend's husband. Once he heard of my need, he proceeded to go through the testing - [Sharon Tomlin](https://pkdcure.org/blog/voice/sharon-tomlin/) - My husband's family has a long history of PKD. My husband, age 72 now, is one of the fortunate ones and received a kidney transplant over 23 years ago from a non-related accident victim from another state. He has never had a rejection episode and we feel so blessed. Our son just received a kidney transplant - [Laranico Wood](https://pkdcure.org/blog/voice/laranico-wood/) - When I was diagnosed a few years ago, all I could think of was that I'd have to go on dialysis. My dad has PKD and he's on dialysis. My doctor told me if my dad is on dialysis 9 times out of 10, I'll have to do the same. I wish a cure could be found - [Nancy Salkeld](https://pkdcure.org/blog/voice/nancy-salkeld/) - In 1996, during exploratory surgery for endometriosis (which would not be confirmed until 15 laters), my surgeon found three fourths of my liver to be covered with cysts. I went through a battery of tests and found that I had cysts on both kidneys, as well, and I was given the diagnosis of ADPKD. Neither - [Cynthia Christiansen](https://pkdcure.org/blog/voice/cynthia-christiansen/) - I participate in the Walk for PKD in memory of my father! He passed from complication of PKD eight years after his kidney transplant. I also walk with the hope to find a cure to support my advancing disease and my children. - [Mary Suydam](https://pkdcure.org/blog/voice/mary-suydam/) - I have ADPKD. I was blessed to receive a life-giving transplant nearly 6 years ago that gave me a second chance at life. I walk for my mother, who passed away way before her time. I walk for all the PKD patients who wait for a transplant. I walk for my children, so that there may be a cure for PKD in their lifetime. - [Jacque English](https://pkdcure.org/blog/voice/jacque-english/) - I was diagnosed with PKD in 2003. I manage my disease with blood pressure medication and regular trips to my nephrologist. My kidneys are getting larger and my function is beginning to decline. Seven years ago this August, my mom passed away from complications from PKD. She battled PKD for years and finally received a - [Emily Stoll](https://pkdcure.org/blog/voice/emily-stoll/) - At my summer family reunion vacation this year, I organized a Party for the PKD Foundation that was sponsored through a Thrivent Financial Action Grant. Through the grant, I got $250 that I used to purchase refreshments for the party, and then about 45 adults and 15 kids (all my extended family) got together to - [Lisa Mohr](https://pkdcure.org/blog/voice/lisa-mohr/) - My father, Will, and his two brothers had PKD. Will died in 1980 when I was only 17, and I have very few memories of him other than him being sick. He and my mother, Audra, had four children. My oldest brother, Mark, does not have PKD. My other brother, Walkin' Jim Stoltz, had PKD - [Stephanie Smetana](https://pkdcure.org/blog/voice/stephanie-smetana/) - My earliest memory of my mom suffering the effects of PKD was of her laying on our couch crying in pain as another cyst had burst. My mom is not a crier. I never got to meet my maternal grandmother and I have lost several aunts and uncles to this disease. My mom was on - [Patti Ruffin](https://pkdcure.org/blog/voice/patti-ruffin/) - Seeing five family members suffer from PKD has given me the passion to carry on the legacy that they couldn't because they ran out of time. I can't control the fact that I have PKD, but I can control how I live with PKD. After two years on dialysis due to my disease, a generous - [Maureen Bickings](https://pkdcure.org/blog/voice/maureen-bickings/) - PKD is not be allowed to beat me! Diagnosed in my thirties with a husband, 3 children and life in full swing, I was terrified! Life changed, not abruptly at first, but slowly. Over the span of a few years I grew tired and became pained and a faint memory of who I used to - [Gene Okun](https://pkdcure.org/blog/voice/gene-okun/) - Gene Okun Meet Gene Okun! Gene has PKD, and so did his father. Since his diagnosis, Gene’s kidneys have grown big (doctors say they may be the world’s largest) and dumb (functioning at only 18 percent). Currently in search of a living donor, Gene is passionate about educating others about PKD and raising awareness on - [David Baron](https://pkdcure.org/blog/voice/david-baron/) - David Baron, Ph.D. I am often dumbfounded by the rapid advances made in molecular biology and genetics since my graduate school days in the 1970’s. It’s all I can do to keep up, but it is the kind of work that is gratifying and it certainly won’t hurt if I can play even a small - [Tom MacAulay](https://pkdcure.org/blog/voice/tom-macaulay/) - Pedaling to Cure PKD Last month, friends Thomas MacAulay, Bill King, Mike Bizal, Ed Williams, Art Berger, and Chuck Mattioni set out on an 18-day biking Tour down the Pacific Coast Highway from Seattle to San Diego to raise awareness for PKD. This epic journey, which covered 1,800 miles and inspired others to donate over - [Nicole Harr](https://pkdcure.org/blog/voice/nicole-harr-2/) - My best friend is giving me the gift of life It’s official: I have a living donor. There have been very few times in my life that so few words have held such tremendous meaning and have brought such profound change to my life. I have said these words with tears flowing and I have - [Paul Chapman](https://pkdcure.org/blog/voice/paul-chapman/) - Hiking to end PKD: Paul Chapman When someone you love has been affected by PKD, one of the most powerful ways you can help fight for them is by raising funds toward research. Whether you donate by yourself, host an event or take on a challenge that inspires others to give to your cause, your - [Peggy Krusell](https://pkdcure.org/blog/voice/peggy-krusell/) - Why I Walk: Meeting milestones to fund research This year in the National Capital Chapter, one team is celebrating some major milestones in their contributions to the Walk for PKD. We recently sat down with team captain Peggy Krusell to learn more about these amazing achievements and why the Walk is so important to her - [Beth Leven](https://pkdcure.org/blog/voice/beth-leven/) - Volunteer Appreciation: Beth Leven In honor of Volunteer Appreciation Week, we put together a special Q&A between an experienced Coordinator and a new Coordinator. Beth Leven, Austin Walk Coordinator, has been involved in the PKD Foundation’s volunteer leadership for the past 15 years in both the Boston and Austin Chapters. In this week’s blog, she - [The Phelps Family](https://pkdcure.org/blog/voice/the-phelps-family/) - The Phelps Family During National Kidney Month in March, Ashley Phelps and her husband Michael sat down for an open discussion about her ADPKD diagnosis, how it affects their family, and what the future holds for their two sons: Michael: How did it make you feel to be diagnosed? Ashley: I was petrified. I had - [Alex Coglianese](https://pkdcure.org/blog/voice/alex-coglianese/) - Why I Walk: Alex Coglianese The PKD Foundation has been a landmark in Alex Coglianese’s life for as long as she can remember. Born the same year as the Foundation’s establishment, she recalls her beloved father, Fred, a PKD patient himself, being one of the organization’s very first supporters. From mailings sent to their home, - [Paige Trischler](https://pkdcure.org/blog/voice/paige-trischler/) - Paige Trischler “Each day I am thankful for Nights that turned into mornings Friends turned into family Dreams that turned into reality And likes that turned into loves…” -Anonymous Those four lines sum up my motto on life. I am thankful that nights turn into mornings because if I did something wrong the previous day, - [Nell Gustavson](https://pkdcure.org/blog/voice/nell-gustavson/) - Finding hope and new life through a long-lost family bond I was diagnosed with PKD in 1987 at the age of 27. This was not a big surprise for me, especially since my father, grandmother and aunt all had the disease. The surprise was who donated a kidney to me—my niece, Liz, whom my older - [Honoring baby Helen's memory through fundraising](https://pkdcure.org/blog/voice/honoring-baby-helens-memory-through-fundraising/) - Voices of PKD: Kristen Neary On May 24, 2002, my husband Keith and I welcomed our first daughter, Helen Grace into the world. She was perfect on the outside and let out a cry after being born. This was a sound we were so relieved to hear. When I was seven months pregnant, we were - [Remembering baby Lauren in honor of Pregnancy and Infant Loss Remembrance Day](https://pkdcure.org/blog/voice/remembering-baby-lauren-in-honor-of-pregnancy-and-infant-loss-remembrance-day/) - Voices of PKD: Megan Kuck In February 2005, my husband and I had a second ultrasound to help us determine the gender of our second child. During the ultrasound, the tech went quiet and told us that she would be right back. In just a few moments, the room was filled with doctors and nurses. Our baby - [Highfill family keeps their babies' memories alive at the Walk for PKD](https://pkdcure.org/blog/voice/highfill-family-keeps-their-babies-memories-alive-at-the-walk-for-pkd/) - Voices of PKD: Lauren Highfill We have lost two babies to polycystic kidney disease (PKD). Ironically they both passed away on July 21st (one year apart). It makes remembering this sad day a little easier to have it all on one day! I suppose the biggest way we honor our boys is by participating in the Walk - [Spreading kindness in honor of baby Juniper's memory](https://pkdcure.org/blog/voice/spreading-kindness-in-honor-of-baby-junipers-memory/) - Voices of PKD: Mandy Wakely On December 10, 2008 my daughter Juniper Isabelle Wakely was born. Twenty minutes later, she died in my arms from autosomal recessive polycystic kidney disease (ARPKD). Even with all the planning I’d done in preparation for my first child, I had not planned for that. I’d never heard of ARPKD before - [Solving two problems at once](https://pkdcure.org/blog/voice/solving-two-problems-at-once/) - Vehicle donation was the best choice for the Beger family It was decision time. Either sink more money into the car or let it go. Kim Beger decided to let it go. "We live in Nebraska and our son, Xavier, was going to be moving back from California," Kim said. "The car he was driving - [Kriste Lewis fulfills her dreams and lives her best life with PKD](https://pkdcure.org/blog/voice/kriste-lewis-fulfills-her-dreams-and-lives-her-best-life-with-pkd/) - It was always on Kriste Lewis's bucket list to try out to be an NFL cheerleader. As she approached her 40th birthday, she decided to give herself a gift and fulfill a lifetime dream by trying out to be a New Orleans Saintsation. Kriste made the team in 2014, competing against women mostly ages 18 - [Grammy nominated artist co-produces album to benefit the PKD Foundation](https://pkdcure.org/blog/voice/grammy-nominated-artist-co-produces-album-to-benefit-the-pkd-foundation/) - Grammy nominated keyboardist/composer/producer, Jeff Lorber, and guitarist, Chuck Loeb team up to co-produce BOP, a one-of-a-kind traditional bebop album that brings together world-class musicians. Jeff Lorber is a kidney transplant recipient who knows all too well the impact PKD can have on a family. "I have seen firsthand the toll PKD can take on families. - [Young scientist on mission to find alternative to his own transplant](https://pkdcure.org/blog/voice/young-scientist-on-mission-to-find-alternative-to-his-own-transplant/) - If Demetri Maxim has anything to say about it, he could be the solution to his own problem. Demetri has PKD. He's also a prize-winning scientist, budding inventor and patent holder, Olympic ski team hopeful, avid cyclist and drummer. And oh, by the way, he's 17 years old. PKD doesn't define Demetri, but it explains - [Transplant Games provide a way to honor organ donation](https://pkdcure.org/blog/voice/transplant-games-provide-a-way-to-honor-organ-donation/) - The Transplant Games of America is a multi-sport festival event for individuals who have undergone life-saving transplant surgeries. Competition events are open to living donors, organ transplant recipients, bone marrow recipients, and a limited number of corneal and tissue transplant recipients. More than an athletic event, the Transplant Games of America highlight the critical importance - [Brightening the future for PKD families](https://pkdcure.org/blog/voice/brightening-the-future-for-pkd-families/) - The spring, for many, signals a new start and a perfect time to set new goals for the rest of the year. For 21-year-old Brianna Rodgers of Grapevine, Texas, 2014 is her year to make a difference in the PKD community. "I just want to take the opportunity to do something good," she said. Flashback - [Kissing for a cause](https://pkdcure.org/blog/voice/kissing-for-a-cause/) - Every wedding is a little different - some couples jump over brooms, break glasses or wear blue. For Karli and Cuyler Franzke, an age-old wedding tradition turned into an opportunity to raise funds to support the PKD Foundation. Several weeks before her wedding, Karli and her mother hatched a plan that they kept secret until - [A family tree of PKD](https://pkdcure.org/blog/voice/a-family-tree-of-pkd/) - Polycystic kidney disease is a family disease. Like freckles and blue eyes, there's a chance that a parent will pass it along to their child. Though Barbara Meskin's family had passed along PKD for many generations, she had no idea that the family disease would impact her right when she was starting a family of - [A heart of gold](https://pkdcure.org/blog/voice/a-heart-of-gold/) - By Trisha Muldoon About Sami Lynn In October 2008, my husband Jason and I found out that we were expecting our first child. In March 2009, we found out that we were having a girl, due mid July 2009. At that same appointment our doctor said that he thought she had PKD. Two days later - [Serving as a voice for young people with PKD](https://pkdcure.org/blog/voice/serving-as-a-voice-for-young-people-with-pkd/) - The average teen is more concerned with school, friends and a ride home from volleyball practice than the health of their renal system. For Kerilyn Benoit, health is at the forefront of her worries. At just 13 years old, Kerilyn was diagnosed with polycystic kidney disease (PKD) after an ultrasound for an abdominal cyst turned - [Taking a stand to change family history](https://pkdcure.org/blog/voice/taking-a-stand-to-change-family-history/) - I didn't want my uncle to be taken away so I just stepped in and helped. Many families carry genetic burdens of disease. Illnesses like breast cancer or chronic issues such as high blood pressure are frequently attributed to family history. For Candi Zitzka, her family's burden has been the debilitating disease of polycystic kidney - [A curvy road to diagnosis](https://pkdcure.org/blog/voice/a-curvy-road-to-diagnosis/) - LeeAnn Hujanen went through a dramatic turn of events that led to her PKD diagnosis on April 11, 2013. Adopted as a child, LeeAnn was unsure of her biological medical history, and didn't know PKD ran in her biological family. In 1999, while she was pregnant with her oldest daughter, the ultrasound tech noticed spots - [Lumps and bumps: One family's remarkable transplant journey](https://pkdcure.org/blog/voice/lumps-and-bumps-one-familys-remarkable-transplant-journey/) - By Stephanie Bost My family's transplant journey began 15 years ago with my grandmother Jean, who was just days away from beginning dialysis to combat the devastating renal failure caused by PKD. In 1997, she received a phone call that would change her life. Transplant doctors discovered that a perfectly matched kidney had been found - [Never lose hope](https://pkdcure.org/blog/voice/never-lose-hope/) - Never lose hope. That's Carol Mainolfi's advice to anyone who is waiting for a kidney transplant. She would know – she received one after three years on dialysis and one failed transplant. "I feel like a different person," said Carol, who received a kidney through a paired kidney exchange last June. "I am slowly getting - [A mother's love](https://pkdcure.org/blog/voice/a-mothers-love/) - Sara Mann is no stranger to the center stage. As an accomplished musician, songwriter and Broadway performer, she has taken her rightful place in that arena on a number of occasions. When she and her husband, Alex, learned they were pregnant with twins, they were overjoyed to learn two new stars would soon be making - [Sharing a kidney and a lifetime of love](https://pkdcure.org/blog/voice/sharing-a-kidney-and-a-lifetime-of-love/) - My husband is the best. He took those marriage vows to heart, in sickness and in health, only thanks to him I'm not sick anymore! Larry and Jan Blaylock first met when they were teachers at the same school. Now married for nearly thirty years, they enjoy spending time together gardening and cheering for their - [Shar Carlyle](https://pkdcure.org/blog/voice/shar-carlyle/) - I have been a PKD Foundation Chapter member for 14 years. I have been to Washington D.C. three times representing kidney patients from California on a number of fronts, both with the PKD Foundation and with NKF. But I'm getting tired now. I invite you younger folks to pick up the reins. Let's continue to - [Felipe Saint-Martin](https://pkdcure.org/blog/voice/felipe-saint-martin/) - I am PKD, this is my relationship with the disease. It's written on my genes as much as everything. By the time I was eight years old, I figured it out that my mother had the same thing that my grandmother died from. The thought of my mother's death became a huge weight in my - [Heather Gillis](https://pkdcure.org/blog/voice/heather-gillis/) - When a child passes away, there are no words that can take away the pain of a parent's loss. It is unimaginable to think of a child dying, but in many people's lives this is their reality, especially in those affected with autosomal recessive polycystic kidney disease (ARPKD), which affects 1 in 20,000 children. This - [Scott Peppet](https://pkdcure.org/blog/voice/scott-peppet/) - My mother died from PKD complications at 61, after having two kidney transplants. Her kidneys failed around age 50, and she had a very rough decade after that. She was constantly in and out of the hospital. I was in my 20s, and it was very hard to watch her suffer. I definitely realized that - [Rachel Kunstadt](https://pkdcure.org/blog/voice/rachel-kunstadt/) - My father has PKD, and in the summer of 2012, he was dying from complications of PKD. My dad had been on dialysis since 1999 and it took a toll on his heart. He was waiting for a transplant but things looked bleak. He was in and out of the hospital and it was a - [Sean Kenny](https://pkdcure.org/blog/voice/sean-kenny/) - My son Patrick has ARPKD, he was diagnosed at 20 weeks during a sonogram. I didn't know what PKD was at the time. Like most people, you don't know about it until it happens to you or a loved one. Patrick is considered "the miracle baby" after what we were told was going to happen - [Cyrilla Haverkamp](https://pkdcure.org/blog/voice/cyrilla-haverkamp/) - My grandmother died in 1961 at the age of 56 from Polycystic Kidney Disease and in June of 2013, I turned 56. As a way to honor her memory and the many family members who have died from PKD I decided to hike the Camino de Santiago. The Camino de Santiago or "The Way of - [Zac Haas](https://pkdcure.org/blog/voice/zac-haas/) - My daughter Anabel was diagnosed with PKD around 20 weeks gestation. We were taken aback regarding the possibility of a serious, life-altering condition. Many emotions went through our minds and affected my entire family emotionally and physically. Anabel is now one year old and thriving. For her first birthday, we invited 50 friends and family - [Gayle Sellars](https://pkdcure.org/blog/voice/gayle-sellars/) - Gayle Sellars passed away in March of 2013, leaving behind a strong legacy of advocacy and passion for finding treatments and a cure for polycystic kidney disease (PKD). Gayle first found out about PKD when her mother, Marilyn Zubo, was diagnosed with autosomal dominant PKD (ADPKD) while Gayle was 19. Gayle found out she too - [Dale Filsell](https://pkdcure.org/blog/voice/dale-filsell/) - I was diagnosed with PKD in 2005 after an MRI on my back. Once I found out PKD was genetic, my mom and sister were tested and diagnosed as well. My grandmother died from PKD, although no one knew the exact kidney complication at the time. My Uncle Victor died two years later, awaiting a - [Jana Cox](https://pkdcure.org/blog/voice/jana-cox/) - I volunteer for the PKD Foundation not only for my daughter who has autosomal recessive PKD (ARPKD), but all of the children out there that have this terrible disease. A relatively rare form of PKD, ARPKD affects approximately 1 in 20,000 children, and often causes death in the first month of life. It is my - [John Jennings](https://pkdcure.org/blog/voice/john-jennings/) - I am a National Guardsman and Army veteran and had just finished two deployments in Saudi Arabia when I was diagnosed with PKD in 1995. At the time, my only symptom was high blood pressure. Eleven years later, those symptoms began to worsen. I was slated to deploy to Afghanistan with the National Guard, but - [Karyn Waxman](https://pkdcure.org/blog/voice/karyn-waxman/) - I can honestly say that the satisfaction I receive staying actively engaged as a volunteer in the PKD Foundation's mission to find treatments and a cure for PKD far outweighs the work element by a long shot. Whether it's rolling up my sleeves to organize a fundraising event, networking to raise PKD awareness, or simply - [Eric Myszka](https://pkdcure.org/blog/voice/eric-myszka/) - I recently lost my mother to a long hard fight with PKD and the lack of public awareness of the disease always amazed me. I decided to volunteer with the goal to build awareness and provide support to those who are currently fighting the disease in the Chicago area. There is a lot of potential - [Christina Prieto](https://pkdcure.org/blog/voice/christina-prieto/) - When I was younger, I knew my dad had an illness but I didn't really understand what PKD was. He is one of 11 children, and we were always told it was a spontaneous mutation and he was the only one in his family with PKD. I found out I had PKD when I was - [Stan and Suzi Munro](https://pkdcure.org/blog/voice/stan-and-suzi-munro/) - [Nicole Harr](https://pkdcure.org/blog/voice/nicole-harr/) - [Sue Mehl](https://pkdcure.org/blog/voice/sue-mehl/) - [Mike Pickett: Fighting the good fight for himself and his daughter](https://pkdcure.org/blog/voice/mike-pickett-fighting-the-good-fight-for-himself-and-his-daughter/) - Mike Pickett plays golf for a living, so organizing a golf tournament to memorialize his mother, Mary, seemed the natural thing to do to honor her and to raise awareness for PKD. Though Mary quietly battled PKD most of her life, she taught her son to always "fight the good fight" as she did, until - [Laverne Duvall's Gift: A Legacy for Future Generations](https://pkdcure.org/blog/voice/laverne-duvalls-gift-a-legacy-for-future-generations/) - PKD is a disease that often devastates many members in one family. It's not unusual for several siblings to battle PKD together. This was the case with the Duvall sisters. In 1965, Mary Ann Duvall wrote a heartfelt letter to her sister Laverne letting her know she was diagnosed with PKD. Mary Ann asked Laverne - [Giving for a better future](https://pkdcure.org/blog/voice/giving-for-a-better-future/) - During the estate planning process, Harold Saul determined it was important for him to include a contribution to the PKD Foundation in his will for the benefit of future generations. Not only does Harold have PKD, but he is the third in his family to have undergone dialysis and a kidney transplant. Before his transplant, - [Young couple joins Founders’ Annual Giving Society to help move the needle](https://pkdcure.org/blog/voice/young-couple-joins-founders-annual-giving-society-to-help-move-the-needle/) - Dustin Williams and Bailey Jackson have been married for two and a half years. Both are getting ready to turn 25, and they have already become members of the PKD Foundation's Founders' Annual Giving Society. In 2014, they became Foundation Partners after attending the PKD National Convention in June 2014. "I was blown away after - [Living donor gives again, donates vehicle](https://pkdcure.org/blog/voice/living-donor-gives-again-donates-vehicle/) - Eight years ago, Bev Benson donated one of her kidneys to her mother who has PKD. Now, she's made another huge donation, this time to the PKD Foundation, to help others suffering from the disease. "Having two vehicles was more of a hassle for us than anything," Bev recalls. Rather than trying to sell her - [Jill Riester](https://pkdcure.org/blog/voice/jill-riester/) - When Jill Riester found out she had PKD, she was a 23-year-old newlywed just home from a military stint in Germany with her United States Army husband…and she was absolutely shocked. No one else in her family had been diagnosed with PKD, and Jill's doctor was of little comfort. He photocopied a few paragraphs from - [Workplace giving proves to be a convenient way to give](https://pkdcure.org/blog/voice/workplace-giving-proves-to-be-a-convenient-way-to-give/) - Janice Wightman supports the PKD Foundation through payroll deduction Janice Wightman doesn't just donate to fight PKD through her employer. It's also where she found her kidney donor, Diane. Stuck at an airport with a friend and colleague from work, she began to open up about having PKD and at some point in the future - [Richard Pearson](https://pkdcure.org/blog/voice/richard-pearson/) - Richard Pearson had always known about his family's PKD genetic history. His great grandmother died from PKD complications, and his mother, Doris, spent most her of adult life worrying about being diagnosed with the disease and passing it to her children. There was a sense of relief when she was diagnosed at the age of - [For Brock Nelson, it's all about increasing his ability to donate to a cause he is passionate about](https://pkdcure.org/blog/voice/for-brock-nelson-its-all-about-increasing-his-ability-to-donate-to-a-cause-he-is-passionate-about/) - After developing a spontaneous mutation of polycystic kidney disease (PKD) five years ago, Brock is currently a PKD Foundation Board of Trustees member and donor. Among the many reasons he chooses to support the organization, Brock says, "The Foundation is critical for helping to develop research to better understand the disease and potential treatments for ## Glossary - [Zebrafish](https://pkdcure.org/blog/glossary/zebrafish/) - The zebrafish is a simple model for studying vertebrate development and genetics and is a means of understanding how not only fish, but all vertebrates including humans, develop from the moment that sperm fertilizes an egg. - [Autosomal dominant polycystic kidney disease (ADPKD)](https://pkdcure.org/blog/glossary/autosomal-dominant-polycystic-kidney-disease-adpkd/) - Autosomal dominant polycystic kidney disease; the more common form of PKD, it occurs in approx. 1 in 500 live births. - [Angiotensin](https://pkdcure.org/blog/glossary/angiotensin/) - A powerful constrictor of blood vessels; it stimulates the production of aldosterone. - [Angiotensinogen](https://pkdcure.org/blog/glossary/angiotensinogen/) - A substance in the blood that forms a hormone called angiotensin. - [ARBs](https://pkdcure.org/blog/glossary/arbs/) - Angiotensin receptor blockers (ARBs); a group of drugs commonly used to treat hypertension in PKD patients. - [Autosomal recessive polycystic kidney disease (ARPKD)](https://pkdcure.org/blog/glossary/autosomal-recessive-polycystic-kidney-disease-arpkd/) - Autosomal recessive polycystic kidney disease; occurs in approx. 1 in 20,000 live births. - [Arteriovenous (AV) graft](https://pkdcure.org/blog/glossary/arteriovenous-av-graft/) - A looped, plastic tube that connects an artery to a vein. - [Arteriovenus (AV) fistula](https://pkdcure.org/blog/glossary/arteriovenus-av-fistula/) - A surgically-created connection from an artery to a vein. - [Aspirate](https://pkdcure.org/blog/glossary/aspirate/) - To draw fluid by suction. - [Bladder](https://pkdcure.org/blog/glossary/bladder/) - A muscular sac in the pelvis that collects urine. - [Blood pressure](https://pkdcure.org/blog/glossary/blood-pressure/) - A measurement of the force of the blood as it flows through the body. - [Blood type](https://pkdcure.org/blog/glossary/blood-type/) - A classification of blood based on the presence or absence of antigens on the surface of red blood cells; there are four major blood types - A, B, AB, and O; your blood type must be compatible with a potential kidney donor. - [Blood type incompatible](https://pkdcure.org/blog/glossary/blood-type-incompatible/) - A transplant option that allows you to receive a kidney from a living donor who has an incompatible blood type; specialized medical treatment is required before and after transplant to prevent rejection. - [Blood urea nitrogen (BUN)](https://pkdcure.org/blog/glossary/blood-urea-nitrogen-bun/) - A measure of kidney function; urea nitrogen is the waste product of dietary protein, so if the urea nitrogen builds up in the blood, it is a sign of decreased kidney function. - [Caffeine](https://pkdcure.org/blog/glossary/caffeine/) - A substance found in coffee, tea, soft-drinks, etc.; it is generally considered best for PKD patients to limit caffeine intake to less than 200-250 mg daily. - [Calcium](https://pkdcure.org/blog/glossary/calcium/) - A mineral that the body needs for strong bones and teeth. Calcium may form stones in the kidney. - [Calcium oxalate](https://pkdcure.org/blog/glossary/calcium-oxalate/) - A common type of crystal that can lead to kidney stones. - [Carrier](https://pkdcure.org/blog/glossary/carrier/) - An individual who carries one copy of a recessive gene like that for ARPKD; they do not have the disease but can pass the mutation on to their offspring. - [Cell proliferation](https://pkdcure.org/blog/glossary/cell-proliferation/) - Cell growth. - [Chorionic villus sampling (CVS)](https://pkdcure.org/blog/glossary/chorionic-villus-sampling-cvs/) - A test used in prenatal diagnosis of chromosomal abnormalities in which a sample of chorionic villi is removed from the placenta for testing. - [Chronic pain](https://pkdcure.org/blog/glossary/chronic-pain/) - Pain that is constant over a long time; long-term pain. - [Computed tomography (CT)](https://pkdcure.org/blog/glossary/computed-tomography-ct/) - A screening test that may involve radiation or iodinated contrast dye, which can be toxic to kidneys. - [Congenital hepatic fibrosis (CHF)](https://pkdcure.org/blog/glossary/congenital-hepatic-fibrosis-chf/) - A liver abnormality common in children with ARPKD; it may lead eventually lead to enlargement of the liver and spleen. - [Creatinine](https://pkdcure.org/blog/glossary/creatinine/) - A waste product of muscle metabolism; the level of creatinine in the blood is a measure of kidney function. - [Creatinine clearance](https://pkdcure.org/blog/glossary/creatinine-clearance/) - A test to calculate approximately how much actual kidney function you have. - [Crossmatch](https://pkdcure.org/blog/glossary/crossmatch/) - A blood test that tells you what antibodies you have in your body. - [Cyclic AMP (cAMP)](https://pkdcure.org/blog/glossary/cyclic-amp-camp/) - Signalling molecule in cells that form tubules in the kidneys; abnormalities can lead to cyst formation. - [Cystitis](https://pkdcure.org/blog/glossary/cystitis/) - A UTI with infection in the bladder. - [Diastolic pressure](https://pkdcure.org/blog/glossary/diastolic-pressure/) - The bottom/second number of the blood pressure reading; it measures the pressure when the heart is relaxing between beats. - [Direct mutation analysis/DNA sequencing](https://pkdcure.org/blog/glossary/direct-mutation-analysis-dna-sequencing/) - A type of DNA testing requires only a single sample from the person being tested. An analysis of the DNA sequences of the PKD1 and PKD2 genes is performed. - [Directed donation](https://pkdcure.org/blog/glossary/directed-donation/) - The most common type of living donation; when a living donor names the person who will receive their organ. - [Diverticula](https://pkdcure.org/blog/glossary/diverticula/) - Outpouchings on the large intestine. - [Diverticulitis](https://pkdcure.org/blog/glossary/diverticulitis/) - Can occur when diverticuli rupture or become infected. - [DNA testing](https://pkdcure.org/blog/glossary/dna-testing/) - A way to find out if you have a PKD gene. See also gene linkage testing and direct mutation analysis. - [Echocardiogram](https://pkdcure.org/blog/glossary/echocardiogram/) - An ultrasound of the heart. - [End-stage renal disease (ESRD)](https://pkdcure.org/blog/glossary/end-stage-renal-disease-esrd/) - When normal kidney function declines and needs to be replaced by dialysis or transplantation; also known as kidney failure; typically considered to occur when GFR is at 10 or less. - [Erythropoietin](https://pkdcure.org/blog/glossary/erythropoietin/) - Also called EPO; a hormone made in the kidney that tells the bone marrow to make red blood cells; if your kidneys fail or are removed, you must be given EPO via blood transfusions or a synthetic supplement. - [Estimated post-transplant survival score (EPTS)](https://pkdcure.org/blog/glossary/estimated-post-transplant-survival-score-epts/) - A percentile score that ranges from zero to 100 and is assigned to each potential transplant recipient; the score is based on how long you will need a functioning kidney as compared to all other transplant candidates on the list. - [Gadolinium](https://pkdcure.org/blog/glossary/gadolinium/) - A special dye used to improve visualization in MRIs. - [Gene linkage testing](https://pkdcure.org/blog/glossary/gene-linkage-testing/) - A type of DNA testing that can determine if you have PKD with 99 percent probability in those with a family history. It requires samples from several family members and looks for “markers” in the DNA. A detailed family history is also required. - [Glomerular filtration rate (GFR)](https://pkdcure.org/blog/glossary/glomerular-filtration-rate-gfr/) - The test used to check how well the kidneys are working; it estimates how much blood passes through the glomeruli each minute. Glomeruli are the tiny filters in the kidneys that filter waste from the blood. - [Glomerulus](https://pkdcure.org/blog/glossary/glomerulus/) - A small tuft of blood capillaries in the kidney, responsible for filtering out waste products. - [Hematuria](https://pkdcure.org/blog/glossary/hematuria/) - Blood in the urine. - [Hemodialysis (Hemo)](https://pkdcure.org/blog/glossary/hemodialysis-hemo/) - A procedure that removes extra fluid, electrolytes and waste from blood using a dialysis machine. - [Hernia](https://pkdcure.org/blog/glossary/hernia/) - Occurs when the contents of a body cavity bulge out of the area where it is normally contained. Two types of hernia, inguinal and umbilical, are more common in those with PKD. - [Human leuocyte antigens (HLA)](https://pkdcure.org/blog/glossary/human-leuocyte-antigens-hla/) - Markers that let your immune system know which cells belong to your body and which do not; used in tissue typing. - [Hypertension](https://pkdcure.org/blog/glossary/hypertension/) - High blood pressure; it affects about 60-70 percent of PKD patients and begins early in the course of the disease. - [Inactivating mutation](https://pkdcure.org/blog/glossary/inactivating-mutation/) - A change in the DNA that leads to a reduced or complete loss of function of a protein. - [Intercranial aneurysm](https://pkdcure.org/blog/glossary/intercranial-aneurysm/) - An aneurysm that occurs in the blood vessels of the brain. - [Kidney Allocation System (KAS)](https://pkdcure.org/blog/glossary/kidney-allocation-system-kas/) - The system that allocates deceased kidney donations to waiting recipients. - [Kidney donor profile index (KDPI)](https://pkdcure.org/blog/glossary/kidney-donor-profile-index-kdpi/) - A percentile score that ranges from zero to 100 and is assigned to each available deceased kidney; the score is associated with how long the kidney is likely to function as compared to other kidneys, based on information about the donor. - [Kidney stones](https://pkdcure.org/blog/glossary/kidney-stones/) - Kidney stones can be painful and occur more often in PKD patients than in the general population. Dr. Arlene Chapman, Dr. Bharathi Reddy and Dr. Anna Zisman will help you understand what kidney stones are, why they happen and what can be done to treat them. - [Lithotripter](https://pkdcure.org/blog/glossary/lithotripter/) - A machine that uses ultrasound waves to treat large kidney stones. - [Lithotripter](https://pkdcure.org/blog/glossary/lithotripter-2/) - A machine that uses ultrasound waves to treat large kidney stones. - [Liver function tests](https://pkdcure.org/blog/glossary/liver-function-tests/) - Blood tests that help determine how well the liver is functioning. - [Living donation](https://pkdcure.org/blog/glossary/living-donation/) - When a living person chooses to donate their kidney (or other organ) to someone who needs a transplant. - [Magnesium](https://pkdcure.org/blog/glossary/magnesium/) - A mineral in the body that is important for metabolism; a deficiency has been associated with high blood pressure. - [Magnetic resonance arteriogram (MRA)](https://pkdcure.org/blog/glossary/magnetic-resonance-arteriogram-mra/) - A type of MRI used to visualize the blood vessels in the brain to screen for aneurysms; it is similar to an MRI scan but does not use contrast dye or radiation. - [Magnetic resonance imaging (MRI)](https://pkdcure.org/blog/glossary/magnetic-resonance-imaging-mri/) - A screening test that uses a powerful magnetic field, radio frequency pulses and a computer to produce detailed pictures of the inside of the body. - [Microscopic hematuria](https://pkdcure.org/blog/glossary/microscopic-hematuria/) - Small amounts of blood in the urine. - [Mitral valve prolapse (MVP)](https://pkdcure.org/blog/glossary/mitral-valve-prolapse-mvp/) - Occurs when the valve between your heart’s left upper chamber (left atrium) and the left lower chamber (left ventricle) doesn’t close properly. - [Mutation](https://pkdcure.org/blog/glossary/mutation/) - An unintended change or typo in a person’s genetic code. - [National Institutes of Health (NIH)](https://pkdcure.org/blog/glossary/national-institutes-of-health-nih/) - The agency of the U.S. government primarily responsible for biomedical and health-related research. - [National Organ Procurement and Transplantation Network (OPTN)](https://pkdcure.org/blog/glossary/national-organ-procurement-and-transplantation-network-optn/) - The national registry where donor organs are matched to waiting recipients. - [Neonatal period](https://pkdcure.org/blog/glossary/neonatal-period/) - The first month of life of a newborn. - [Nephrectomy](https://pkdcure.org/blog/glossary/nephrectomy/) - A surgical procedure to remove one or both kidneys. - [Nephrogenic Systemic Fibrosis (NSF)](https://pkdcure.org/blog/glossary/nephrogenic-systemic-fibrosis-nsf/) - A rare but serious complication that can arise from the use of gadolinium. - [Nephrologist](https://pkdcure.org/blog/glossary/nephrologist/) - A doctor who specializes in kidneys. - [Nephrons](https://pkdcure.org/blog/glossary/nephrons/) - Tiny filters in the kidney made of thin blood vessels; each kidney has about one million nephrons. - [Neuroradiologist](https://pkdcure.org/blog/glossary/neuroradiologist/) - The type of surgeon who repairs aneurysms. - [Non-directed donation](https://pkdcure.org/blog/glossary/non-directed-donation/) - When a living donor does not name a specific person to receive their organ; also called altruistic donation. - [Non-inactivating mutation](https://pkdcure.org/blog/glossary/non-inactivating-mutation/) - A change in the DNA that does not lead to a loss of function of a protein. - [Non-truncating mutation](https://pkdcure.org/blog/glossary/non-truncating-mutation/) - A change in the DNA that does not truncate or shorten the protein. - [NSAIDs](https://pkdcure.org/blog/glossary/nsaids/) - Non-steroidal anti-inflammatory drugs like aspirin or ibuprofen; these are not advisable for PKD patients to take. - [Paired donation](https://pkdcure.org/blog/glossary/paired-donation/) - A transplant option for candidates who have a living donor who is medically able, but cannot donate a kidney to their intended candidate because they are incompatible (i.e. poorly matched); consists of two or more kidney donor/recipient pairs whose blood types are not compatible; the two recipients trade donors so that each recipient can receive a kidney with a compatible blood type. - [Pain clinic](https://pkdcure.org/blog/glossary/pain-clinic/) - A clinic or office that uses biofeedback and supports groups to help manage pain. - [Peritoneal dialysis (PD)](https://pkdcure.org/blog/glossary/peritoneal-dialysis-pd/) - A type of dialysis that removes extra fluid, electrolytes and waste using the lining of the abdominal cavity. - [Peritoneum](https://pkdcure.org/blog/glossary/peritoneum/) - The abdominal cavity. - [Polycystic kidney disease (PKD)](https://pkdcure.org/blog/glossary/polycystic-kidney-disease-pkd/) - Polycystic kidney disease; a genetic disease which causes uncontrolled growth of cysts in the kidneys. There are two forms of PKD: ADPKD and ARPKD. - [PKD1](https://pkdcure.org/blog/glossary/pkd1/) - The gene that provides instructions for the polycystin-1 protein; a mutation of the PKD1 gene will cause a person to have ADPKD. - [PKD2](https://pkdcure.org/blog/glossary/pkd2/) - The gene that provides instructions for the polycystin-2 protein; a mutation of the PKD2 gene will cause a person to have ADPKD. - [PKHD1](https://pkdcure.org/blog/glossary/pkhd1/) - The gene that codes for ARPKD. - [Polycystin](https://pkdcure.org/blog/glossary/polycystin/) - A protein that is encoded by the PKD1 and PKD2 genes; regulates many important tubular cell functions. - [Polycystin-1](https://pkdcure.org/blog/glossary/polycystin-1/) - The protein that is coded by the PKD1 gene. - [Polycystin-2](https://pkdcure.org/blog/glossary/polycystin-2/) - The protein that is coded by the PKD2 gene. - [Portal hypertension](https://pkdcure.org/blog/glossary/portal-hypertension/) - An abnormality in the liver which can impede the return of blood from the intestine to the liver; it can lead to distention and increased pressure in the veins around the esophagus, the stomach, and the intestine. This can rupture, leading to possibly life-threatening gastro-intestinal bleeding. In addition, portal hypertension can cause spleen enlargement and hypersplenism resulting in low red blood cell, white blood cell - [Positive crossmatch](https://pkdcure.org/blog/glossary/positive-crossmatch/) - A transplant option that allows you to receive a kidney from a living donor who does not match you due to antibodies; specialized medical treatment is required before and after transplant to prevent rejection; this type of donation is only considered when no other option is available. - [Potassium](https://pkdcure.org/blog/glossary/potassium/) - A substance essential to all living cells found in most foods; supplements should not be taken without consultation by your doctor or dietitian. - [Preemptive transplantation](https://pkdcure.org/blog/glossary/preemptive-transplantation/) - Having a transplant before dialysis is required. - [Pre-implantation genetic diagnosis (PGD)](https://pkdcure.org/blog/glossary/pre-implantation-genetic-diagnosis-pgd/) - A form of early genetic diagnoses that uses vitro fertilization; eggs harvested from a mother are fertilized in a laboratory with the father’s sperm then the fertilized embryos are tested for ARPKD; embryos that are diagnosed as free of the disorder are then placed in the uterus with the intent to initiate a pregnancy. - [Proteinuria](https://pkdcure.org/blog/glossary/proteinuria/) - Protein in the urine. - [Pyelonephritis](https://pkdcure.org/blog/glossary/pyelonephritis/) - A urinary tract infection (UTI) when the infection is in the kidney. - [Red blood cells (RBCs)](https://pkdcure.org/blog/glossary/red-blood-cells-rbcs/) - RBCs in the urine is called hematuria. - [Regurgitation](https://pkdcure.org/blog/glossary/regurgitation/) - When blood leaks back to the top part of the heart caused by mitral valve prolapse (MVP). - [Renal dietitian](https://pkdcure.org/blog/glossary/renal-dietitian/) - A dietitian with special knowledge and experience in kidney disease. - [Renin](https://pkdcure.org/blog/glossary/renin/) - An enzyme produced in the kidneys. - [Sonogram](https://pkdcure.org/blog/glossary/sonogram/) - See ultrasound. - [Renin-angiostensin-aldosterone system](https://pkdcure.org/blog/glossary/renin-angiostensin-aldosterone-system/) - A hormone system in the body that regulates blood pressure and fluid balance. - [Satiety](https://pkdcure.org/blog/glossary/satiety/) - Feeling full; a common side effect of severe polycystic liver disease (PLD). - [Sclerose](https://pkdcure.org/blog/glossary/sclerose/) - To harden. - [Sex chromosomes](https://pkdcure.org/blog/glossary/sex-chromosomes/) - The chromosomes that contain genes that determine gender. - [Spontaneous mutation](https://pkdcure.org/blog/glossary/spontaneous-mutation/) - A mutation that arises naturally and is not inherited from parents; also called a "de novo." - [Systolic pressure](https://pkdcure.org/blog/glossary/systolic-pressure/) - The top/first number of the blood pressure reading; it measures the pressure when the heart is pumping. - [Therapeutic coil](https://pkdcure.org/blog/glossary/therapeutic-coil/) - A device surgically placed in an aneurysm to repair it. - [Total kidney volume (TKV)](https://pkdcure.org/blog/glossary/total-kidney-volume-tkv/) - The total volume your kidney holds and is typically measured by MRI. - [Truncating mutation](https://pkdcure.org/blog/glossary/truncating-mutation/) - A change in the DNA that can truncate or shorten the protein. - [Tuberous sclerosis complex](https://pkdcure.org/blog/glossary/tuberous-sclerosis-complex/) - A rare, multi-system genetic disease that causes benign tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs and skin; can affect infants who have ADPKD. - [Tubules](https://pkdcure.org/blog/glossary/tubules/) - The filtering part of the kidney. - [Ultrasound](https://pkdcure.org/blog/glossary/ultrasound/) - The most common and least costly screening method for PKD; a screening method that uses sound waves to develop images of the inside of the body. - [United Network for Organ Sharing (UNOS)](https://pkdcure.org/blog/glossary/united-network-for-organ-sharing-unos/) - The organization that sets transplantation policy and who operates NOTA (see National Organ Procurement and Transplantation Network). - [Ureters](https://pkdcure.org/blog/glossary/ureters/) - The tubes from the kidneys to the bladder. - [Urethra](https://pkdcure.org/blog/glossary/urethra/) - The tube that goes from the bladder to the outside. - [Uric acid](https://pkdcure.org/blog/glossary/uric-acid/) - A common type of crystal that can lead to kidney stones. - [Urinalysis](https://pkdcure.org/blog/glossary/urinalysis/) - An analysis of the urine to determine the type of bacteria that is causing infection. - [Urinary tract infection (UTI)](https://pkdcure.org/blog/glossary/urinary-tract-infection-uti/) - Commonly called a UTI, an infection caused by bacteria in the bladder, kidneys, or cysts. - [Urine](https://pkdcure.org/blog/glossary/urine/) - Liquid by-product of the body secreted by the kidneys. - [Urine citrate](https://pkdcure.org/blog/glossary/urine-citrate/) - A substance that prevents formation of kidney stones; it may be decreased in some PKD patients. - [Venous catheter](https://pkdcure.org/blog/glossary/venous-catheter/) - A tube inserted into a vein in your neck, chest, or groin area; not intended for long-term use. - [White blood cells (WBCs)](https://pkdcure.org/blog/glossary/white-blood-cells-wbcs/) - WBCs are typically present in the urine in small numbers; large numbers in the urine could suggest a UTI. - [Urine collection (24-hour)](https://pkdcure.org/blog/glossary/urine-collection-24-hour/) - A test done in combination with the blood creatinine test to determine kidney function, called creatinine clearance and is an approximation of glomerular filtration rate (GFR). - [ACE inhibitors](https://pkdcure.org/blog/glossary/ace-inhibitors/) - Angiotensin converting enzyme (ACE) inhibitors; a group of drugs commonly used to treat hypertension in PKD patients. - [Aldosterone](https://pkdcure.org/blog/glossary/aldosterone/) - A hormone that causes the body to retain salt and lose potassium. - [Amniocentesis](https://pkdcure.org/blog/glossary/amniocentesis/) - A test used in prenatal diagnosis of chromosomal abnormalities in which a small amount of amniotic fluid, which contains fetal tissues, is sampled from the amniotic sac surrounding a developing fetus, and the fetal DNA is examined for genetic abnormalities. - [Amniotic fluid](https://pkdcure.org/blog/glossary/amniotic-fluid/) - The protective fluid contained in the amniotic sac of a pregnant female; the fluid is partially supplied by fetal urine which is produced by the fetal kidneys; in ARPKD, poor prenatal renal function causes a reduction in this fluid. - [Aneurysm](https://pkdcure.org/blog/glossary/aneurysm/) - An outpouching in a blood vessel which can leak or rupture. - [Angiogram](https://pkdcure.org/blog/glossary/angiogram/) - Procedures that utilize contrast dye injected into the blood vessels in order to clearly visualize them; it is typically used when an aneurysm is suspected or to look for blockages in heart vessels. - [Autosomes](https://pkdcure.org/blog/glossary/autosomes/) - A chromsome that is not a sex chromosome; most cells in our body have 22 sets of autosomes. ## Global Blocks - [Community Pages - Walk, COE, Registry](https://pkdcure.org/global-block/community-pages-walk-coe-registry/) - [Global](https://pkdcure.org/global-block/global/) - [Headline test](https://pkdcure.org/global-block/headline-test/) - [Card Block Global](https://pkdcure.org/global-block/card-block-global/) - [Wysiwyg Global](https://pkdcure.org/global-block/wysiwyg-global/) - [Card and wysiwyg global](https://pkdcure.org/global-block/card-and-wysiwyg-global/) - [A new card block](https://pkdcure.org/global-block/a-new-card-block/) ## Events - [Seattle and Portland Community Meeting](https://pkdcure.org/event/seattle-and-portland-community-meeting-4/) - Join us for our upcoming community meetings via video chat! - [Seattle and Portland Community Meeting](https://pkdcure.org/event/seattle-and-portland-community-meeting-3/) - Join us for our upcoming community meetings via video chat! - [Twin Cities Community Meeting](https://pkdcure.org/event/twin-cities-community-meeting-4/) - Planning meeting for 2026 Twin Cities PKD Walk for a Cure - [Detroit Community Meeting](https://pkdcure.org/event/detroit-community-meeting-16/) - Join us for our upcoming community meeting via video conference! - [Baltimore Community Meeting](https://pkdcure.org/event/baltimore-community-meeting/) - Targeting GLP-1 to Slow PKD Progression - [St. Louis Community Meeting](https://pkdcure.org/event/st-louis-community-meeting-12/) - Finding a Living Donor: Community Conversation - [PKDCON Continued: Your Questions Answered](https://pkdcure.org/event/pkdcon-continued-your-questions-answered/) - Join us for an exclusive post-PKDCON webinar designed to continue the conversation and address the questions that matter most to you. - [Milwaukee Community Meeting](https://pkdcure.org/event/milwaukee-community-meeting-12/) - Join us for our upcoming community meeting via video conference! - [New Jersey Community Meeting](https://pkdcure.org/event/new-jersey-community-meeting-12/) - Join us for our upcoming community meeting via video conference! - [Detroit Community Meeting](https://pkdcure.org/event/detroit-community-meeting-15/) - Join us for our upcoming community meeting via video conference! - [St. Louis Community Meeting](https://pkdcure.org/event/st-louis-community-meeting-11/) - Join us for our upcoming community meeting via video conference! - [South Florida Community Meeting](https://pkdcure.org/event/south-florida-community-meeting-3/) - South Florida Community Meeting PKD Progression: What can I expect? - [Twin Cities Community Meeting](https://pkdcure.org/event/twin-cities-community-meeting-3/) - Community Connection: Walk Updates & Ways to Get Involved - [National Capital Community Meeting](https://pkdcure.org/event/national-capital-community-meeting-8/) - Join us for our upcoming community meeting via video conference! - [Seattle & Portland Community Meeting](https://pkdcure.org/event/seattle-portland-community-meeting-17/) - Join us for our upcoming community meetings via video chat. - [Seattle & Portland Community Meeting](https://pkdcure.org/event/seattle-portland-community-meeting-16/) - Join us for our upcoming community meetings via video chat. - [New York Community Meeting](https://pkdcure.org/event/new-york-community-meeting/) - Advances in Kidney Transplant: How Donor Cells Are Changing the Future - [San Antonio Community Meeting](https://pkdcure.org/event/san-antonio-community-meeting-2/) - Updates & Pain Management in PKD - [Pittsburgh Community Meeting](https://pkdcure.org/event/pittsburgh-community-meeting-6/) - Join us for our upcoming community meeting via video conference! - [PKD Thrive Community Meeting](https://pkdcure.org/event/pkd-thrive-community-meeting-5/) - Come as you are with your favorite drink(s). We chat about life in general and talk about what's going on in our lives. A super casual meeting. - [Milwaukee Community Meeting](https://pkdcure.org/event/milwaukee-community-meeting-11/) - Join us for our upcoming community meeting via video conference! - [Northeast Ohio Community Meeting](https://pkdcure.org/event/northeast-ohio-community-meeting-2/) - Come together with others in the Northeast Ohio PKD community for an informal virtual meet-up focused on connection and conversation. - [PKD Parents Community Meeting](https://pkdcure.org/event/pkd-parents-community-meeting-10/) - Join us for our upcoming community meeting via video conference! - [National Capital Community Meeting](https://pkdcure.org/event/national-capital-community-meeting-7/) - Join us for our upcoming community meeting via video conference! - [New York City Community Meeting](https://pkdcure.org/event/new-york-city-community-meeting-9/) - Protecting Your Kidneys through Nutrition: Everyday Steps that Make a Difference - [New York City Community Meeting](https://pkdcure.org/event/new-york-city-community-meeting-8/) - Community Fundraiser Debrief & Planning - [Detroit Community Meeting](https://pkdcure.org/event/detroit-community-meeting-14/) - Join us for our upcoming community meeting via video conference! Share your journey and hear from others within the PKD community who understand what you are experiencing. We'll share resources to help you manage living with PKD. - [Pittsburgh Community Meeting](https://pkdcure.org/event/pittsburgh-community-meeting-5/) - Join us for our upcoming community meeting via video conference! Share your journey and hear from others within the PKD community who understand what you are experiencing. - [Rogosin Advanced Research Series](https://pkdcure.org/event/rogosin-advanced-research-series/) - To help answer your questions about clinical trials, the Rogosin Institute, a PKD Foundation Center of Excellence, launched the Rogosin Advanced Research Series. - [Loma Linda PKD Nutrition Webinar](https://pkdcure.org/event/loma-linda-pkd-nutrition-webinar/) - To help patients and families learn more about diet and PKD, Loma Linda University, a PKD Foundation Partner Clinic, is hosting a webinar. - [Seattle + Portland Community Meeting](https://pkdcure.org/event/seattle-portland-community-meeting-15/) - Join us for our upcoming community meeting via video conference! Share your journey and hear from others within the PKD community who understand what you are experiencing. We'll share resources to help you manage living with PKD. Two opportunities to join our virtual chat - you pick the date that works for you Saturday, June - [Phoenix Community Meeting PKD Research Update with Chris Chen, Ph.D](https://pkdcure.org/event/phoenix-community-meeting-pkd-research-update-with-chris-chen-ph-d/) - Join the Phoenix Community and the PKD Foundation's Vice President of Research Programs, Chris Chen, Ph.D., for an informative virtual meeting about PKD research. He'll provide an overview of the latest developments in PKD research and share insights on the direction of future studies. This is a great opportunity to learn about ongoing research initiatives, - [Stronger Together: PKD Community Gathering](https://pkdcure.org/event/stronger-together-pkd-community-gathering/) - The Detroit Community invites individuals and families affected by PKD to come together for an in-person gathering focused on connection. - [Milwaukee Community Meeting](https://pkdcure.org/event/milwaukee-community-meeting-9/) - Advancing PKD Research: Farabursen Clinical Trial - [Pittsburgh Community Meeting](https://pkdcure.org/event/pittsburgh-community-meeting-4/) - Join us for our upcoming community meeting via video conference! - [Milwaukee Community Meeting](https://pkdcure.org/event/milwaukee-community-meeting-10/) - Join us for our upcoming community meeting via video conference! - [New Jersey Community Meeting](https://pkdcure.org/event/new-jersey-community-meeting-11/) - Join us for our upcoming community meeting via video conference! - [2026 NYC Comedy for a Cure](https://pkdcure.org/event/2026-nyc-comedy-for-a-cure/) - Join us for an afternoon of laughter in NYC, all in support of the PKD Foundation and its vision of ending polycystic kidney disease (PKD). Enjoy a lineup of talented comedians while helping raise awareness and funds for those affected by PKD. - [Seattle and Portland Community Meeting](https://pkdcure.org/event/seattle-and-portland-community-meeting-2/) - Join us for our upcoming community meeting via video conference! - [Seattle & Portland Community Meeting](https://pkdcure.org/event/seattle-portland-community-meeting-14/) - Join us for our upcoming community meeting via video conference! - [PKD Parents Community Meeting](https://pkdcure.org/event/pkd-parents-community-meeting-9/) - Join us for our upcoming community meeting via video conference! - [2026 PKD Education Form University of Maryland Baltimore](https://pkdcure.org/event/2026-pkd-education-form-university-of-maryland-baltimore/) - PKD1 Function and New Paths to ADPKD Therapies, PKD Research Updates (national and local), PKD and Diet: Practical Tools for Everyday Eating, PKD in pediatrics. - [Detroit Community Meeting](https://pkdcure.org/event/detroit-community-meeting-13/) - Join us for our upcoming community meeting via video conference! - [New England Community Meeting](https://pkdcure.org/event/new-england-community-meeting-3/) - PKD Care & Research Update: University of Vermont Medical Center - [New England Community Meeting](https://pkdcure.org/event/new-england-community-meeting-2/) - PKD Care & Research Update: University of Vermont Medical Center - [Atlanta Community Meeting](https://pkdcure.org/event/atlanta-community-meeting/) - Let’s Connect: Meet local volunteers and community - [St. Louis Community Support Meeting](https://pkdcure.org/event/st-louis-community-support-meeting/) - Join us for our upcoming community meeting via video conference! - [National Capital Community Meeting](https://pkdcure.org/event/national-capital-community-meeting-6/) - Join us for our upcoming community meeting via video conference! - [PKDCON 2026](https://pkdcure.org/event/pkdcon-2026/) - Reuniting the PKD Community in Person and Virtually June 12 - 13, 2026 Register now! - [Chicago Community Meeting](https://pkdcure.org/event/chicago-community-meeting/) - Join us as we bring together individuals and families affected by PKD in the Chicagoland area, along with clinicians and scientists who are passionate about advancing PKD care and research. We are creating space for connection, shared experiences, and building relationships between the PKD patient community and clinicians and researchers. Through sharing personal stories and - [Pittsburgh Community Meeting](https://pkdcure.org/event/pittsburgh-community-meeting-3/) - Join us for our upcoming community meeting via video conference! - [Indianapolis Community Meeting](https://pkdcure.org/event/indianapolis-community-meeting-4/) - Nutritional Strategies for PKD Patients - [Salt Lake City Community Meeting](https://pkdcure.org/event/salt-lake-city-community-meeting/) - Center of Excellence Spotlight: Caring for Patients with PKD - [New Jersey Community Meeting](https://pkdcure.org/event/new-jersey-community-meeting-10/) - PKD Care and Management - What You Need to Know - [New York City Community Meeting Chat & Chew](https://pkdcure.org/event/new-york-city-community-meeting-chat-chew-2/) - Join us for our upcoming community meeting via video conference! - [National Capital Community Meeting: PKD Research Update](https://pkdcure.org/event/national-capital-community-meeting-pkd-research-update/) - Join the National Capital Community and the PKD Foundation's Vice President of Research Programs, Chris Chen, Ph.D., for an informative virtual meeting about PKD research. He'll provide an overview of the latest developments in PKD research and share insights on the direction of future studies. - [New England Community Meeting: The Value of Genetic Testing in PKD](https://pkdcure.org/event/new-england-community-meeting-the-value-of-genetic-testing-in-pkd/) - Please join Dr. Peter Czarnecki from Beth Israel Deaconess Medical Center, a PKD Center of Excellence, in a webinar that will explain how genetic testing is changing the landscape of PKD diagnosis, prognostication and treatment. - [New York City Community Meeting: Family Planning: Genetics, Nephrology, and Nutrition](https://pkdcure.org/event/new-york-city-community-meeting-family-planning-genetics-nephrology-and-nutrition/) - Join our March Community meeting bringing together specialists in genetics, kidney health, and nutrition from Columbia University Medical Center, a PKD COE to support planning for a healthy pregnancy. - [Houston Community PKD Meeting: Progression: What can I expect?](https://pkdcure.org/event/houston-community-pkd-meeting-progression-what-can-i-expect/) - PKD progression looks different for everyone. Join us to explore how PKD can change over time, what factors may influence progression, and what patients and families can expect at different stages of PKD. - [PKD Thrive Community Meeting](https://pkdcure.org/event/pkd-thrive-community-meeting-4/) - Join us for our upcoming community meeting! It is a peer support group and coffee talk for younger members in the SoCal/Los Angeles area to get together and share about our lives. People outside of the Gen Z / Millennial ish demographic are also welcomed to join. - [PKD Parents Community Meeting](https://pkdcure.org/event/pkd-parents-community-meeting-8/) - Join us for our upcoming community meeting via video conference! - [PKD Advocacy in Action: What it Means and How to Get Involved](https://pkdcure.org/event/pkd-advocacy-in-action-what-it-means-and-how-to-get-involved/) - Join us for an engaging webinar on how to advocate for the polycystic kidney disease (PKD) community locally and beyond. - [PKD Thrive Community Meeting](https://pkdcure.org/event/pkd-thrive-community-meeting-3/) - Come as you are with your favorite drink(s). We chat about life in general and talk about what's going on in our lives. A super casual meeting. - [University of Southern California PKD Foundation Center of Excellence Educational Session](https://pkdcure.org/event/university-of-southern-california-pkd-foundation-center-of-excellence-educational-session/) - Living Well with PKD: Nutrition, Lifestyle, and Pregnancy Considerations - [St. Louis Community Meeting](https://pkdcure.org/event/st-louis-community-meeting-10/) - Meet Washington University School of Medicine: A PKD Foundation Center of Excellence - [Milwaukee Community Meeting](https://pkdcure.org/event/milwaukee-community-meeting-8/) - Join us for our upcoming community meeting via video conference! - [St. Louis Community Meeting](https://pkdcure.org/event/st-louis-community-meeting-9/) - Join us as we welcome Seth Goldberg, M.D. from PKD Foundation Center of Excellence, Washington University School of Medicine. - [PKD Parents Community Meeting: Tolvaptan Use in Pediatric ADPKD and ARPKD](https://pkdcure.org/event/pkd-parents-community-meeting-tolvaptan-use-in-pediatric-adpkd-and-arpkd/) - Join us to learn about the use of tolvaptan to treat ADPKD and ARPKD in children. - [Seattle & Portland Community Meeting](https://pkdcure.org/event/seattle-portland-community-meeting-13/) - Join us for our upcoming community meeting via video conference! - [Seattle & Portland Community Meeting](https://pkdcure.org/event/seattle-portland-community-meeting-12/) - Join us for our upcoming community meeting via video conference! - [The 8th Annual CKD Summit](https://pkdcure.org/event/the-8th-annual-ckd-summit/) - The PKD Foundation is a proud sponsor of the 8th Annual CKD Summit. - [St. Louis Community Meeting](https://pkdcure.org/event/st-louis-community-meeting-8/) - Preparing for Dialysis: Options, Expectations, and Emotional Readiness - [Northeast Ohio Community Meeting](https://pkdcure.org/event/northeast-ohio-community-meeting/) - Introducing PKD Centers of Excellence: Cleveland Clinic and Cleveland Clinic Childrens - Learning How Comprehensive Care Supports Every Stage of PKD - [National Kidney Month 2026](https://pkdcure.org/event/national-kidney-month-2026/) - National Kidney Month is a time when communities across the country raise awareness about kidney disease. - [World Kidney Day 2026](https://pkdcure.org/event/world-kidney-day-2026/) - World Kidney Day is about raising awareness of the important role kidneys play in our health to help lessen the impact of kidney disease worldwide. - [New Jersey Community Meeting](https://pkdcure.org/event/new-jersey-community-meeting-9/) - Join us for our upcoming community meeting via video conference! - [Seattle & Portland Community Meeting](https://pkdcure.org/event/seattle-portland-community-meeting-11/) - Share your journey and hear from others within the PKD community who understand what you are experiencing. - [Seattle & Portland Community Meeting](https://pkdcure.org/event/seattle-portland-community-meeting-10/) - Share your journey and hear from others within the PKD community who understand what you are experiencing. - [Indianapolis Community Meeting: Insights into Transplantation with Asif Sharfuddin, M.D.](https://pkdcure.org/event/indianapolis-community-meeting-indiana-donor-network-tour-2/) - Please join the PKD community at The Indiana Donor Network on February 17 at 6pm for an information presentation and QA. - [PKD Parents Community Meeting](https://pkdcure.org/event/pkd-parents-community-meeting-7/) - Join us for our upcoming community meeting via video conference! - [Phoenix Community Meeting: PKD Lunchtime Connect](https://pkdcure.org/event/phoenix-community-meeting-pkd-lunchtime-connect/) - It’s a new year—let’s reconnect! Grab your lunch and join us for a virtual catch-up with fellow PKD patients. - [New York City Community Meeting: Shared Gifts: Kidney Donor Stories](https://pkdcure.org/event/new-york-city-community-meeting-shared-gifts-kidney-donor-stories/) - Join us for a meaningful community conversation focused on the power of kidney donation. - [South Florida Community Meeting](https://pkdcure.org/event/south-florida-community-meeting-2/) - Join us for our upcoming community meeting via video conference! - [Detroit Community Meeting](https://pkdcure.org/event/detroit-community-meeting-12/) - Join us for our upcoming community meeting via video conference! - [Seattle & Portland Community Meeting](https://pkdcure.org/event/seattle-portland-community-meeting-8/) - Join us for our upcoming community meeting via video conference! - [Seattle & Portland Community Meeting](https://pkdcure.org/event/seattle-portland-community-meeting-9/) - Join us for our upcoming community meeting via video conference! - [Detroit Community Meeting](https://pkdcure.org/event/detroit-community-meeting-11/) - Join us for our upcoming community meeting! - [Milwaukee Community Meeting](https://pkdcure.org/event/milwaukee-community-meeting-7/) - Join us for our upcoming community meeting via video conference! - [ISN-PKDF Webinar: Early Diagnosis and Risk Stratification in ADPKD](https://pkdcure.org/event/isn-pdkf-webinar-early-diagnosis-and-risk-stratification-in-adpkd/) - This webinar will introduce the problem of CKDu, a form of chronic kidney disease primarily affecting young men in rural agricultural communities, with no identifiable link to common causes of CKD. - [Seattle & Portland Community Meeting](https://pkdcure.org/event/seattle-portland-community-meeting-7/) - Join us for our upcoming community meeting via video conference! - [Pittsburgh Community Meeting](https://pkdcure.org/event/pittsburgh-community-meeting-2/) - Join us for our upcoming community meeting via video conference! - [New Jersey Community Meeting](https://pkdcure.org/event/new-jersey-community-meeting-8/) - Join us for our upcoming community meeting via video conference! - [Baltimore Community Meeting: PKD Research in Maryland and Beyond](https://pkdcure.org/event/baltimore-community-meeting-pkd-research-in-maryland-and-beyond/) - Join us to learn about PKD research occurring right here in the Baltimore area. - [Detroit Community Meeting](https://pkdcure.org/event/detroit-community-meeting-10/) - Join us for our upcoming community meeting via video conference! Share your journey and hear from others within the PKD community who understand what you are experiencing. We'll share resources to help you manage living with PKD. - [New England Community Meeting: Key Information on Upcoming Clinical Trials in Your Area](https://pkdcure.org/event/new-england-community-meeting-key-information-on-upcoming-clinical-trials-in-your-area/) - Join us for an informative session about clinical trials happening in your area. - [St. Louis Community Meeting](https://pkdcure.org/event/st-louis-community-meeting-7/) - Join us for our upcoming community meeting via video conference! - [San Antonio Community Meeting: Understanding Polycystic Liver Disease (PLD)](https://pkdcure.org/event/san-antonio-community-meeting-understanding-polycystic-liver-disease-pld/) - Join us to hear a presentation on polycystic liver disease (PLD). - [Milwaukee Community Meeting](https://pkdcure.org/event/milwaukee-community-meeting-6/) - Join us for our upcoming community meeting via video conference! - [New Jersey Community Meeting](https://pkdcure.org/event/new-jersey-community-meeting-7/) - Join us for our upcoming community meeting via video conference! - [PKD Foundation In-Person Advocacy Day 2026](https://pkdcure.org/event/pkd-foundation-in-person-advocacy-day-2026/) - As part of the PKD Foundation’s Hybrid Advocacy Days, we’re excited to invite members of the PKD Community to join us March 3 - 4, 2026, in Washington, D.C., to educate federal elected officials about how they can improve the lives of those with PKD. - [PKD Foundation Virtual Advocacy Day 2026](https://pkdcure.org/event/pkd-foundation-virtual-advocacy-day-2026/) - We’re excited to invite the PKD community to participate in a nationwide Virtual Advocacy Day as part of the PKD Foundation’s Hybrid Advocacy Days. - [Seattle & Portland Community](https://pkdcure.org/event/seattle-portland-community/) - Join us for our upcoming community meeting via virtual chat! - [National Capital Community Meeting: How Organs Are Matched: A Look Inside Organ Placement](https://pkdcure.org/event/national-capital-community-meeting-how-organs-are-matched-a-look-inside-organ-placement/) - Join us to hear from, Gregory Mainolfi, Organ Placement Coordinator, about how donated organs are evaluated, matched, and allocated to recipients. - [South Florida Community Meeting: Understanding the Transplant Evaluation Process](https://pkdcure.org/event/south-florida-community-meeting-understanding-the-transplant-evaluation-process-2/) - Join us for a community discussion that breaks down the transplant evaluation journey—from referral to listing. - [Detroit Community Meeting](https://pkdcure.org/event/detroit-community-meeting-9/) - Join us for our upcoming community meeting via video conference! - [National Capital Community Meeting](https://pkdcure.org/event/national-capital-community-meeting-5/) - Join us for our upcoming community meeting via video conference! - [Baltimore Community Meeting: PKD Community and Conversation](https://pkdcure.org/event/baltimore-community-meeting-pkd-community-and-conversation/) - Join us in person for PKD Community & Conversation on Saturday, January 10, 2026 from 10:30 am- 12:30 pm at the cozy OCA Mocha Café community meeting room. - [Twin Cities Community: Mayo Clinic PKD Center of Excellence Q&A](https://pkdcure.org/event/twin-cities-community-mayo-clinic-pkd-center-of-excellence-qa/) - Join us for a special Q&A session with Dr. Neera Dahl, Medical Director of the Mayo Clinic Rochester PKD Center of Excellence. - [South Florida Community Meeting: Understanding the Transplant Evaluation Process](https://pkdcure.org/event/south-florida-community-meeting-understanding-the-transplant-evaluation-process/) - Join us for a community discussion that breaks down the transplant evaluation journey—from referral to listing. Learn what tests and assessments are involved, who makes up your transplant team, and how decisions are made. - [Pittsburgh Community Meeting](https://pkdcure.org/event/pittsburgh-community-meeting/) - Join us for our upcoming community meeting via video conference! - [Detroit Community Meeting](https://pkdcure.org/event/detroit-community-meeting-8/) - Join us for our upcoming community meeting via video conference! - [New York City Community Meeting: PKD Research Update](https://pkdcure.org/event/new-york-city-community-meeting-pkd-research-update/) - Join the New York Community and the PKD Foundation's Vice President of Research Programs, Chris Chen, Ph.D., for an informative virtual meeting about PKD research. - [Milwaukee Community Meeting](https://pkdcure.org/event/milwaukee-community-meeting-5/) - Join us for our upcoming community meeting via video conference! - [Seattle and Portland Community](https://pkdcure.org/event/seattle-and-portland-community/) - Join us for our upcoming community meeting via virtual chat! - [PKD Parents Community Meeting](https://pkdcure.org/event/pkd-parents-community-meeting-6/) - Join us for our upcoming community meeting via video conference! - [You Do Good - Kendra Gives Back Event](https://pkdcure.org/event/you-do-good-kendra-gives-back-event/) - Join us for a Kendra Gives Back Event - [Research 101: How Clinical Trials and the ADPKD Registry Drive Progress](https://pkdcure.org/event/research-101-how-clinical-trials-and-the-adpkd-registry-drive-progress/) - Join us for an educational webinar focused on helping patients and families understand the importance of PKD research participation. - [Giving Tuesday 2026](https://pkdcure.org/event/giving-tuesday-2026/) - What moments mean the most to you? Birthdays, weddings, quiet evenings with loved ones? For families facing polycystic kidney disease, these moments are too often stolen by pain, hospital visits, and uncertainty. - [Indianapolis Community Meeting: Indiana Donor Network Tour](https://pkdcure.org/event/indianapolis-community-meeting-indiana-donor-network-tour/) - Join us for a unique opportunity to go behind the scenes at the Indiana Donor Network, where lives are transformed every day through the gift of organ and tissue donation. - [Detroit Community Meeting](https://pkdcure.org/event/detroit-community-meeting-7/) - Join us for our upcoming community meeting via video conference! - [New Jersey Community Meeting](https://pkdcure.org/event/new-jersey-community-meeting-6/) - Join us for our upcoming community meeting via video conference! - [PKD Educational Webinar and Q & A with Dr. Fouad Chebib](https://pkdcure.org/event/pkd-educational-webinar-and-q-a-with-dr-fouad-chebib-2/) - Join Dr. Fouad Chebib, Director of the Mayo Clinic PKD Center of Excellence, for a live conversation exploring the latest breakthroughs in autosomal dominant polycystic kidney disease (ADPKD) care. - [PKD Educational Webinar and Q & A with Dr. Fouad Chebib](https://pkdcure.org/event/pkd-educational-webinar-and-q-a-with-dr-fouad-chebib/) - Join Dr. Fouad Chebib, Director of the Mayo Clinic PKD Center of Excellence, for a live conversation exploring the latest breakthroughs in autosomal dominant polycystic kidney disease (ADPKD) care. - [National Capital Community Meeting](https://pkdcure.org/event/national-capital-community-meeting-4/) - Understanding Kidney Transplantation - [Seattle & Portland Community Meeting](https://pkdcure.org/event/seattle-portland-community-meeting-6/) - Join us for our upcoming community meeting via virtual chat! - [Detroit Community Meeting](https://pkdcure.org/event/detroit-community-meeting-6/) - Join us for our upcoming community meeting via video conference! - [Milwaukee Community](https://pkdcure.org/event/milwaukee-community/) - Newest in PKD research and Treatment Options - [Kidney Conversations: Voices of Transplant Recipients](https://pkdcure.org/event/university-of-maryland-center-of-excellence-kidney-conversations-voices-of-transplant-recipients/) - University of Maryland, Center of Excellence - [New Jersey Community Meeting](https://pkdcure.org/event/new-jersey-community-meeting-5/) - Join us for our upcoming community meeting via video conference! - [Seattle & Portland Community Meeting](https://pkdcure.org/event/seattle-portland-community-meeting-5/) - Join us for our upcoming community meeting via video chat! - [Twin Cities Community Meeting](https://pkdcure.org/event/twin-cities-community-meeting-2/) - Beyond the Walk for PKD - [PKD Parents Community Meeting](https://pkdcure.org/event/pkd-parents-community-meeting-5/) - Join us for a discussion with Dr. Paul Grimm, Pediatric Nephrologist at Stanford Medicine Children’s, to learn about the DISOT Study at Stanford. - [You Do Good - Give Back Event](https://pkdcure.org/event/you-do-good-give-back-event/) - Join us for a Kendra Gives Back Event. - [Detroit Community Meeting](https://pkdcure.org/event/detroit-community-meeting-5/) - Join us for our upcoming community meeting via video conference! - [National Capital Community Meeting](https://pkdcure.org/event/national-capital-community-meeting-3/) - Join us for our upcoming community meeting via video conference! - [PKD Parents Community Meeting](https://pkdcure.org/event/pkd-parents-community-meeting-4/) - Pediatric hepatologist, Jaime Chu, MD from PKD Foundation Partner Clinic, Mount Sinai Hospital, to lead an important discussion on liver health in children affected by ARPKD and ADPKD. - [National Capital Community Meeting: The Journey of Living Donation: One Couple’s Experience](https://pkdcure.org/event/national-capital-community-meeting-the-journey-of-living-donation-one-couples-experience/) - Join us for an inspiring PKD Community Meeting! We’ll hear from a living kidney donor who will share her powerful story of donating to her husband. - [Seattle/Portland Community Meeting](https://pkdcure.org/event/seattle-portland-community-meeting-4/) - Join us for our upcoming community meeting via video conference! - [St. Louis Community Meeting](https://pkdcure.org/event/st-louis-community-meeting-6/) - Kidney Transplant and Liver Transplant for PKD and PLD - [New York City Community Meeting: Understanding Aneurysms and Polycystic Liver Disease (PLD)](https://pkdcure.org/event/new-york-city-community-meeting-chat-chew/) - Heedeok Han, MD from PKD Foundation Center of Excellence, Columbia University Medical Center, will join us to discuss what you need to know about aneurysms and polycystic liver disease. - [New Jersey Community Meeting](https://pkdcure.org/event/new-jersey-community-meeting-4/) - Join us for our upcoming community meeting via video conference! Share your journey and hear from others within the PKD community who understand what you are experiencing. - [San Antonio Community Meeting](https://pkdcure.org/event/san-antonio-community-meeting/) - Join us for our upcoming community meeting! Share your PKD journey and hear from others within the community who understand what you’re experiencing. - [Milwaukee Community Meeting](https://pkdcure.org/event/milwaukee-community-meeting-4/) - Share your journey and hear from others within the PKD community who understand what you are experiencing. We'll share resources to help you manage living with PKD. - [New Jersey September Community Meeting](https://pkdcure.org/event/new-jersey-september-community-meeting/) - Share your journey and hear from others within the PKD community who understand what you are experiencing. We'll share resources to help you manage living with PKD. - [Indianapolis Community Meeting](https://pkdcure.org/event/indianapolis-community-meeting-3/) - Join us for our upcoming community meeting! Share your PKD journey and hear from others within the community who understand what you’re experiencing. - [St. Louis Community Meeting: Walk Training & Gathering Volunteers](https://pkdcure.org/event/st-louis-community-meeting-walk-training-gathering-volunteers/) - Join us on Monday, September 15 to help us get ready for the St. Louis Walk for PKD! - [New York City Community Meeting](https://pkdcure.org/event/new-york-city-community-meeting-7/) - Join us for our upcoming community meeting via video conference! Share your journey and hear from others within the PKD community who understand what you are experiencing. We'll share resources to help you manage living with PKD. - [PKD Parents Community Meeting](https://pkdcure.org/event/pkd-parents-community-meeting-3/) - Join fellow PKD parents for an open conversation! We’ll share our stories and connect over the unique challenges and hopes of raising a child with PKD. - [Seattle & Portland Community Meeting](https://pkdcure.org/event/seattle-portland-community-meeting-3/) - Join us for our upcoming community meeting via video conference! - [Charleston Community: Take PKD out to the Park](https://pkdcure.org/event/charleston-community-take-pkd-out-to-the-park/) - Join us for an afternoon of fun, food, and fellowship with your PKD community. - [Kansas City Community Meeting: SupportEduSocial Tour of KC](https://pkdcure.org/event/kansas-city-community-meeting-supportedusocial-tour-of-kc/) - Join us for a support/education/social meeting with the Kansas City PKD Community. - [Detroit Community Meeting](https://pkdcure.org/event/detroit-community-meeting-4/) - Join us for our upcoming community meeting via video conference! - [Hudson Valley Community Meeting](https://pkdcure.org/event/hudson-valley-community-meeting-4/) - Join us for our upcoming community meeting via video conference! - [PKD Awareness Day 2025: Insights on the Latest ADPKD KDIGO Guidelines](https://pkdcure.org/event/pkd-awareness-day-2025-insights-on-the-latest-adpkd-kdigo-guidelines/) - This is a complimentary conference for the PKD community. ACCME credits are available for clinicians. Program Overview VIRTUAL CONFERENCE Comprehensive care of patients with Polycystic Kidney Disease. Learn Objectives Outline the clinical presentations of patients with Polycystic Kidney Disease (PKD). Review the diagnostic criteria for Polycystic Kidney Disease. Review genetics of PKD. Integrate prognostic tools - [Milwaukee Community Meeting](https://pkdcure.org/event/milwaukee-community-meeting-3/) - Join us for our upcoming community meeting via video conference! - [New Jersey Community Meeting](https://pkdcure.org/event/new-jersey-community-meeting-3/) - Join us for our upcoming community meeting via video conference! - [St. Louis Community Meeting](https://pkdcure.org/event/st-louis-community-meeting-5/) - Join us for our upcoming community meeting via video conference! - [New York City Community Meeting](https://pkdcure.org/event/new-york-city-community-meeting-6/) - Virtual Meeting with Guest Speaker, Dana Leifer, MD - [Confidently Navigating ADPKD: Understanding the New KDIGO Guideline](https://pkdcure.org/event/confidently-navigating-adpkd-understanding-the-new-kdigo-guideline/) - Beyond the Kidneys – The Whole Body Impact of ADPKD - [Indianapolis Community Meeting](https://pkdcure.org/event/indianapolis-community-meeting-2/) - Join us for our upcoming community meeting In-Person! - [PKD Thrive Community Meeting](https://pkdcure.org/event/pkd-thrive-community-meeting-2/) - Diagnosed with PKD? You are not alone! - [PKD Parents Community Meeting](https://pkdcure.org/event/pkd-parents-community-meeting-2/) - ARPKD journey to dual transplant - [New York City Community Meeting](https://pkdcure.org/event/new-york-city-community-meeting-5/) - Join us for our upcoming community meeting via video conference! - [Seattle + Portland Community Meeting](https://pkdcure.org/event/seattle-portland-community-meeting-2/) - Join us for our upcoming community meeting via video conference! - [Cooking with PKD: A Plant-Based Approach](https://pkdcure.org/event/cooking-with-pkd-a-plant-based-approach/) - University Health Texas Diabetes Institute - Teaching Kitchen - [St. Louis Community Meeting](https://pkdcure.org/event/st-louis-community-meeting-3/) - Share your journey and hear from others within the PKD community who understand what you are experiencing. We'll share resources to help you manage living with PKD. - [St. Louis Community Education Meeting](https://pkdcure.org/event/st-louis-community-meeting-4/) - I Have PKD. What do I do? - [PKD Applied Underwriters Invitational Golf Event](https://pkdcure.org/event/pkd-applied-underwriters-invitational-golf-event/) - Join us at the Lakewood National Golf Club on October 27, 2025 for the PKD Applied Underwriters Invitational Golf Event, to raise funds to help end PKD! - [New York City Community Meeting](https://pkdcure.org/event/new-york-city-community-meeting-4/) - Join the New York City community for our June meeting focused on a current clinical trial on PKD and how you or someone you know may be able to participate. - [Phoenix Community Meeting](https://pkdcure.org/event/33438/) - Our Phoenix Community meeting, hosted by Mayo Clinic, invites all who wish to engage in conversations about the best way to manage kidney and liver cysts, as well as suspected ruptures. Discussions will include patient experience with signs and symptoms, suspected triggers, infections, and pain management. - [Hudson Valley Community Meeting](https://pkdcure.org/event/hudson-valley-community-meeting-3/) - Share your journey and hear from others within the PKD community who understand what you are experiencing. We'll share resources to help you manage living with PKD. - [Detroit Community Meeting](https://pkdcure.org/event/detroit-community-meeting-3/) - Join us for our upcoming community meeting via video conference! - [San Antonio Community Meeting](https://pkdcure.org/event/33450/) - Join us for an informative and reassuring conversation with Dr. Roque Diaz Wong, Nephrologist, San Antonio Kidney, as he breaks down what to expect if kidney function declines. This session is designed to educate without overwhelming and will cover: - [Confidently Navigating ADPKD: Understanding the New KDIGO Guidelines](https://pkdcure.org/event/confidently-navigating-adpkd-understanding-the-new-kdigo-guidelines/) - Managing ADPKD – Treatments, Lifestyle, & Living Well - [New Jersey Community Meeting](https://pkdcure.org/event/new-jersey-community-meeting-2/) - Share your journey and hear from others within the PKD community who understand what you are experiencing. We'll share resources to help you manage living with PKD. - [Indianapolis Community Meeting](https://pkdcure.org/event/indianapolis-community-meeting/) - Did you know that approximately 10% of ADPKD patients develop the disease due to a spontaneous genetic mutation, with no known family history of PKD? Dr. Juddith Maddatu, Clinic Director, and Dr. Melissa Makar from Indiana University School of Medicine, will join us this month for an engaging discussion about the genetics of ADPKD, spontaneous mutations, and what this means for patients and families. - [PKD Parents Community Meeting](https://pkdcure.org/event/pkd-parents-community-meeting/) - PKD Diagnosis and What's Next - [Los Angeles Community Meeting](https://pkdcure.org/event/los-angeles-community-meeting/) - Join us for our upcoming community meeting! Join us for an IN-PERSON event focused on the live donor transplant process, including how to find a living donor. A light lunch will be provided, and parking is free. - [Seattle & Portland Community Meeting](https://pkdcure.org/event/seattle-portland-community-meeting/) - Share your journey and hear from others within the PKD community who understand what you are experiencing. We'll share resources to help you manage living with PKD. - [Charlotte Community Meeting](https://pkdcure.org/event/charlotte-community-meeting/) - Ready to reignite our Charlotte Region PKD Community connection. Please join us for a one hour kick off call to re-engage with our fellow PKDers and families. In addition to a speaker, we will plan upcoming meeting dates and in person meet ups around the region for the remainder of the year. - [Milwaukee Community Meeting](https://pkdcure.org/event/milwaukee-community-meeting-2/) - Join us for our upcoming community meeting via video conference! Share your journey and hear from others within the PKD community who understand what you are experiencing. We'll share resources to help you manage living with PKD. - [South Florida Community Meeting](https://pkdcure.org/event/south-florida-community-meeting/) - Join the South Florida Community for our first virtual meeting of 2025. We’re excited to welcome Christopher Naranjo, D.O., from the Katz Family Division of Nephrology and Hypertension at the University of Miami Miller School of Medicine. Dr. Naranjo will share expert insights on nutrition and diet while living with PKD. - [St. Louis Community Meeting](https://pkdcure.org/event/st-louis-community-meeting-2/) - Join the St. Louis Community for our virtual May meeting. Glen Kemper will share his personal experience with bilateral nephrectomy. Connect, ask questions, and gain insights from Glen about his surgery. - [New England Community Meeting](https://pkdcure.org/event/new-england-community-meeting/) - Join us for an informative session featuring exciting updates for PKD patients from the University of Vermont Medical Center, a PKD Foundation Center of Excellence. - [New Orleans Community Meeting](https://pkdcure.org/event/new-orleans-community-meeting-2/) - Join us for our upcoming community meeting via video conference! - [New Jersey Community Meeting](https://pkdcure.org/event/new-jersey-community-meeting/) - Join us for our upcoming community meeting via video conference! - [National Capital Community Meeting](https://pkdcure.org/event/national-capital-community-meeting-2/) - Join us for our upcoming community meeting via video conference! - [Detroit Community Meeting](https://pkdcure.org/event/detroit-community-meeting-2/) - Join us for our upcoming community meeting via video conference! - [Kansas City Community Meeting](https://pkdcure.org/event/kansas-city-community-meeting/) - Join us for an informative discussion about the latest updates on organ donation and the kidney transplant process. Learn how to register as an organ donor, support transplant patients, and navigate the United Network for Organ Sharing (UNOS) waitlist. We will share essential resources to help patients maintain their waitlist status and explore both deceased - [Milwaukee Community Meeting](https://pkdcure.org/event/milwaukee-community-meeting/) - Understanding the Registry with Chris Chen - [National Capital Community Meeting](https://pkdcure.org/event/national-capital-community-meeting/) - Meet & Greet of 2025 - [New York City Community Meeting](https://pkdcure.org/event/new-york-city-community-meeting/) - We’re excited to welcome Legislator Porcari from New York State Senator Samra Brouk’s office to discuss legislation aimed at expanding tax deductions for organ donors—helping to ease financial concerns and encourage more life-saving donations. - [Detroit Community Meeting](https://pkdcure.org/event/detroit-community-meeting/) - Join us for our upcoming community meeting via video conference! Share your journey and hear from others within the PKD community who understand what you are experiencing. We'll share resources to help you manage living with PKD. - [Hudson Valley Community Meeting](https://pkdcure.org/event/hudson-valley-community-meeting/) - Join the Hudson Valley Community for our virtual April meeting. Nephrologist Heedeok Han, M.D., from Columbia University, will join us to provide a brief overview of ADPKD and updates from his clinic (a PKD Foundation Center of Excellence). This is also a great way to meet fellow PKD community members and share your thoughts on - [New Orleans Community Meeting](https://pkdcure.org/event/new-orleans-community-meeting/) - We’re excited to introduce our new PKD Connect Ambassador, Sophie Palopoli, who will be joining us to kick off this exciting virtual gathering of the New Orleans PKD community! Sophie will share her vision for staying connected and engaged as we continue to build a strong, supportive community. This meeting is a fantastic opportunity to - [Twin Cities Community Meeting](https://pkdcure.org/event/twin-cities-community-meeting/) - Join us for our upcoming community meeting via video conference! Share your journey and hear from others within the PKD community who understand what you are experiencing. We'll share resources to help you manage living with PKD. - [New York City Community Meeting](https://pkdcure.org/event/new-york-city-community-meeting-3/) - Join us for our upcoming community meeting via video conference! Share your journey and hear from others within the PKD community who understand what you are experiencing. We'll share resources to help you manage living with PKD. - [Confidently Navigating ADPKD: Understanding KDIGO Care Guidelines](https://pkdcure.org/event/confidently-navigating-adpkd-understanding-kdigo-care-guidelines-decoding-adpkd-diagnosis-prognosis-genetics/) - Decoding ADPKD: Diagnosis, Prognosis, & Genetics - [PKD Thrive Community Meeting](https://pkdcure.org/event/pkd-thrive-community-meeting/) - A virtual peer lead gathering primarily focused on younger adults with both ARPKD and ADPKD. This is an informal space where we talk about our lives, experiences, and strengthen our community. PKD Thrive brings together young adults with PKD. We offer support, compassion, and a safe place to connect and interact with others that understand - [New York City Community Meeting](https://pkdcure.org/event/new-york-city-community-meeting-2/) - Join us for a supportive and informative community meeting focused on coping with polycystic kidney disease. Living with a long-term health condition presents unique challenges, but you are not alone. This session will provide a space to connect with others, share experiences, and explore practical strategies for managing the emotional aspects of chronic illness. Dr. - [Kidney Fight Trivia Night 2025](https://pkdcure.org/event/kidney-fight-trivia-night/) - What's better than trivia night? A trivia night benefitting the PKD community! - [St. Louis Community Meeting](https://pkdcure.org/event/st-louis-community-meeting/) - Join the virtual St. Louis Community next month to learn an overview of uremia—its symptoms and how it affects the body. Nephrologist John Edwards, M.D., from St. Louis University (a PKD Foundation Center of Excellence), will lead our discussion and answer your questions. Together, we'll talk about strategies for managing symptoms and maintaining quality of life. - [Seattle and Portland Community Meeting](https://pkdcure.org/event/seattle-and-portland-community-meeting/) - Share your journey and hear from others within the PKD community who understand what you are experiencing. We'll share resources to help you manage living with PKD. - [Virtual Hill Day 2025](https://pkdcure.org/event/virtual-hill-day-2025/) - Join other PKD patients, providers, caregivers and supporters for advocacy day virtual meetings on March 20. Advocates will have the chance to engage directly with federal lawmakers and staff and encourage them to support policies that will advance PKD research and care. - [In-Person Hill Day 2025](https://pkdcure.org/event/in-person-hill-day-2025/) - You and fellow PKD advocates will meet with Members of Congress urging them to support policies that will improve PKD treatment and care including continued federal funding for PKD research and removing barriers to living organ donation. - [World Kidney Day](https://pkdcure.org/event/world-kidney-day/) ## Categories - [News](https://pkdcure.org/blog/category/news/) ## Center Types - [Pediatric Clinic](https://pkdcure.org/blog/center_type/pediatric-clinic/) - [Partner Clinic](https://pkdcure.org/blog/center_type/partner-clinic/) - [Center of Excellence](https://pkdcure.org/blog/center_type/center-of-excellence/) ## Formats - [Books](https://pkdcure.org/blog/format/books/) - [Press Release](https://pkdcure.org/blog/format/press-release/) - [Videos](https://pkdcure.org/blog/format/videos/) - [Webinars](https://pkdcure.org/blog/format/webinars/) - [General Info](https://pkdcure.org/blog/format/general-info/) - [Living with PKD](https://pkdcure.org/blog/format/living-with-pkd/) - [Caregivers](https://pkdcure.org/blog/format/caregivers/) - [Newly Diagnosed](https://pkdcure.org/blog/format/newly-diagnosed/) - [PKD Parents](https://pkdcure.org/blog/format/pkd-parents/) - [Blog Post](https://pkdcure.org/blog/format/blog-post/) - [podcast](https://pkdcure.org/blog/format/podcast/) ## Resource Categories - [Advocacy](https://pkdcure.org/blog/resource_category/advocacy/) - [Dialysis](https://pkdcure.org/blog/resource_category/dialysis/) - [Drug Therapy and Treatments](https://pkdcure.org/blog/resource_category/drug-therapy-treatments/) - [Living with PKD](https://pkdcure.org/blog/resource_category/healthy-living/) - [Research](https://pkdcure.org/blog/resource_category/research/) - [The Basics of PKD](https://pkdcure.org/blog/resource_category/basics/) - [Transplantation](https://pkdcure.org/blog/resource_category/transplantation/) - [Young Children](https://pkdcure.org/blog/resource_category/young-children/) - [Living Post-Transplant](https://pkdcure.org/blog/resource_category/living-post-transplant/) - [Caregivers](https://pkdcure.org/blog/resource_category/caregivers/) - [Approaching Kidney Failure](https://pkdcure.org/blog/resource_category/approaching-kidney-failure/) - [Newly Diagnosed](https://pkdcure.org/blog/resource_category/newly-diagnosed/) - [PKD Parents](https://pkdcure.org/blog/resource_category/pkd-parents/) - [ADPKD](https://pkdcure.org/blog/resource_category/adpkd/) - [ARPKD](https://pkdcure.org/blog/resource_category/arpkd/) - [PKD News](https://pkdcure.org/blog/resource_category/pkd-news/) - [Walk for PKD](https://pkdcure.org/blog/resource_category/walk-for-pkd/) - [Education](https://pkdcure.org/blog/resource_category/education/) - [Family Life](https://pkdcure.org/blog/resource_category/family-life/) - [Recipes](https://pkdcure.org/blog/resource_category/recipes/) - [Fundraise Your Way](https://pkdcure.org/blog/resource_category/fundraise-your-way/) - [ADPKD Registry](https://pkdcure.org/blog/resource_category/adpkd-registry/) - [Run for PKD](https://pkdcure.org/blog/resource_category/run-for-pkd/) - [Donate](https://pkdcure.org/blog/resource_category/donate/) - [Staying Healthy](https://pkdcure.org/blog/resource_category/staying-healthy/) - [Communities](https://pkdcure.org/blog/resource_category/communities/) - [Diet](https://pkdcure.org/blog/resource_category/diet/) - [Centers of Excellence](https://pkdcure.org/blog/resource_category/centers-of-excellence/) - [Podcast](https://pkdcure.org/blog/resource_category/podcast/) ## Medical Center Categories - [Affiliated kidney transplant center](https://pkdcure.org/blog/medical_center_category/affiliated-kidney-transplant-center/) - [Cardiologists](https://pkdcure.org/blog/medical_center_category/cardiologists/) - [Dermatologist](https://pkdcure.org/blog/medical_center_category/dermatologist/) - [Dieticians or Nutritionists](https://pkdcure.org/blog/medical_center_category/dieticians-or-nutritionists/) - [Genetic testing and counseling center](https://pkdcure.org/blog/medical_center_category/genetic-testing-and-counseling-center/) - [Hemodialysis](https://pkdcure.org/blog/medical_center_category/hemodialysis/) - [High-risk pregnancy obstetricians](https://pkdcure.org/blog/medical_center_category/high-risk-pregnancy-obstetricians/) - [Home hemodialysis](https://pkdcure.org/blog/medical_center_category/home-hemodialysis/) - [Interventional radiologist (familiar with cyst aspiration)](https://pkdcure.org/blog/medical_center_category/interventional-radiologist-familiar-with-cyst-aspiration/) - [Liver specialists with expertise in PKD (or PLD specialists)](https://pkdcure.org/blog/medical_center_category/liver-specialists-with-expertise-in-pkd-or-pld-specialists/) - [Neurosurgeon/neurologists (familiar with aneurysm screening and treatment)](https://pkdcure.org/blog/medical_center_category/neurosurgeon-neurologists-familiar-with-aneurysm-screening-and-treatment/) - [Participation in current clinical studies](https://pkdcure.org/blog/medical_center_category/participation-in-current-clinical-studies/) - [Peritoneal dialysis](https://pkdcure.org/blog/medical_center_category/peritoneal-dialysis/) - [Prescribes Tolvaptan](https://pkdcure.org/blog/medical_center_category/prescribes-tolvaptan/) - [Social workers](https://pkdcure.org/blog/medical_center_category/social-workers/) - [Urologists](https://pkdcure.org/blog/medical_center_category/urologists/) - [Mental health specialists](https://pkdcure.org/blog/medical_center_category/mental-health-specialists/) ## FAQ Types - [Donors](https://pkdcure.org/blog/faq_type/donors/) - [Patients](https://pkdcure.org/blog/faq_type/patients/) - [Living with PKD](https://pkdcure.org/blog/faq_type/living-with-pkd/) - [The ADPKD Registry](https://pkdcure.org/blog/faq_type/the-adpkd-registry/) - [Newly Diagnosed](https://pkdcure.org/blog/faq_type/newly-diagnosed/) - [About the Disease](https://pkdcure.org/blog/faq_type/about-the-disease/) - [Clinician & Research](https://pkdcure.org/blog/faq_type/clinician-research/) - [Finding Care](https://pkdcure.org/blog/faq_type/finding-care/) - [Centers of Excellence](https://pkdcure.org/blog/faq_type/centers-of-excellence/) - [CTA FAQs](https://pkdcure.org/blog/faq_type/cta-faqs/) - [Lifestyle](https://pkdcure.org/blog/faq_type/lifestyle/) - [ADPKD Registry (What to Expect)](https://pkdcure.org/blog/faq_type/adpkd-registry-what-to-expect/) - [ARPKD](https://pkdcure.org/blog/faq_type/arpkd/) - [Matching Gift](https://pkdcure.org/blog/faq_type/matching-gift/) ## Global Categories - [Research](https://pkdcure.org/blog/global/research/) - [Newly Diagnosed](https://pkdcure.org/blog/global/newly-diagnosed/) - [Caregivers](https://pkdcure.org/blog/global/caregivers/) - [Featured](https://pkdcure.org/blog/global/featured/) - [ADPKD](https://pkdcure.org/blog/global/adpkd-2/) - [PKD News](https://pkdcure.org/blog/global/pkd-news/) - [Walk for PKD](https://pkdcure.org/blog/global/walk-for-pkd/) - [Education](https://pkdcure.org/blog/global/education/) - [Family Life](https://pkdcure.org/blog/global/family-life/) - [Recipes](https://pkdcure.org/blog/global/recipes/) - [Living with PKD](https://pkdcure.org/blog/global/living-with-pkd-2/) - [ADPKD Registry](https://pkdcure.org/blog/global/adpkd-registry/) - [Staying Healthy](https://pkdcure.org/blog/global/staying-healthy/) - [Transplantation](https://pkdcure.org/blog/global/transplantation-2/) - [Communities](https://pkdcure.org/blog/global/communities/) - [Tolvaptan](https://pkdcure.org/blog/global/tolvaptan/) - [Voices of PKD](https://pkdcure.org/blog/global/voices-of-pkd/) - [PKD Parents](https://pkdcure.org/blog/global/pkd-parents/) - [Approaching Kidney Failure](https://pkdcure.org/blog/global/approaching-kidney-failure/) - [Living Post-Transplant](https://pkdcure.org/blog/global/living-post-transplant/) - [ARPKD](https://pkdcure.org/blog/global/arpkd/) - [Advocacy](https://pkdcure.org/blog/global/advocacy/) - [Centers of Excellence](https://pkdcure.org/blog/global/centers-of-excellence/) - [Dialysis](https://pkdcure.org/blog/global/dialysis/) - [Diet](https://pkdcure.org/blog/global/diet/) - [Donate](https://pkdcure.org/blog/global/donate/) - [Drug Therapy and Treatments](https://pkdcure.org/blog/global/drug-therapy-treatments/) - [Fundraise Your Way](https://pkdcure.org/blog/global/fundraise-your-way/) - [Polycystic Liver Disease](https://pkdcure.org/blog/global/pld/) - [Teens and Young Adults (13-20)](https://pkdcure.org/blog/global/teens-young-adults/) - [The Basics of PKD](https://pkdcure.org/blog/global/basics/) - [Young Children](https://pkdcure.org/blog/global/young-children/) - [Podcast](https://pkdcure.org/blog/global/podcast/) - [Indianapolis](https://pkdcure.org/blog/global/indianapolis/) - [Aneurysm](https://pkdcure.org/blog/global/aneurysm/) - [CHF](https://pkdcure.org/blog/global/chf/) - [Children](https://pkdcure.org/blog/global/children/) - [Complications](https://pkdcure.org/blog/global/complications/) - [Conference](https://pkdcure.org/blog/global/conference/) - [Congenital Hepatic Fibrosis](https://pkdcure.org/blog/global/congenital-hepatic-fibrosis/) - [Diagnosis](https://pkdcure.org/blog/global/diagnosis/) - [End Stage Kidney Disease](https://pkdcure.org/blog/global/end-stage-kidney-disease/) - [ESKD](https://pkdcure.org/blog/global/eskd/) - [Handbook](https://pkdcure.org/blog/global/handbook/) - [Healthcare](https://pkdcure.org/blog/global/healthcare/) - [Healthcare Team](https://pkdcure.org/blog/global/healthcare-team/) - [Immunosuppression](https://pkdcure.org/blog/global/immunosuppression/) - [Kidney donation](https://pkdcure.org/blog/global/kidney-donation/) - [Kidney Failure](https://pkdcure.org/blog/global/kidney-failure/) - [Kidney transplant](https://pkdcure.org/blog/global/kidney-transplant/) - [Living donor](https://pkdcure.org/blog/global/living-donor/) - [Management](https://pkdcure.org/blog/global/management/) - [Mental Health](https://pkdcure.org/blog/global/mental-health/) - [Nutrition](https://pkdcure.org/blog/global/nutrition/) - [PKD](https://pkdcure.org/blog/global/pkd/) - [PKDCON](https://pkdcure.org/blog/global/pkdcon/) - [Symptoms](https://pkdcure.org/blog/global/symptoms/) - [TKV](https://pkdcure.org/blog/global/tkv/) - [Total kidney volume](https://pkdcure.org/blog/global/total-kidney-volume/) - [Transplant evaluation](https://pkdcure.org/blog/global/transplant-evaluation/) - [Treatment](https://pkdcure.org/blog/global/treatment/) - [Webinar](https://pkdcure.org/blog/global/webinar/) - [Wellness](https://pkdcure.org/blog/global/wellness/) - [COE](https://pkdcure.org/blog/global/coe/) - [genetic testing](https://pkdcure.org/blog/global/genetic-testing/) - [genetics](https://pkdcure.org/blog/global/genetics/) - [living donation](https://pkdcure.org/blog/global/living-donation/) - [Progression](https://pkdcure.org/blog/global/progression/) - [Nephrectomy](https://pkdcure.org/blog/global/nephrectomy/) - [Pregnancy](https://pkdcure.org/blog/global/pregnancy/) - [St. Louis](https://pkdcure.org/blog/global/st-louis/) - [San Antonio](https://pkdcure.org/blog/global/san-antonio/) - [Detroit](https://pkdcure.org/blog/global/detroit/) - [Hudson Valley](https://pkdcure.org/blog/global/hudson-valley/) - [Phoenix](https://pkdcure.org/blog/global/phoenix/) - [New York](https://pkdcure.org/blog/global/new-york/) - [Birmingham](https://pkdcure.org/blog/global/birmingham/) - [Los Angeles](https://pkdcure.org/blog/global/los-angeles/) - [Seattle](https://pkdcure.org/blog/global/seattle/) - [Milwaukee](https://pkdcure.org/blog/global/milwaukee/) - [New Jersey](https://pkdcure.org/blog/global/new-jersey/) - [Charlotte](https://pkdcure.org/blog/global/charlotte/) - [Thrive](https://pkdcure.org/blog/global/thrive/) - [Portland](https://pkdcure.org/blog/global/portland/) - [Charleston](https://pkdcure.org/blog/global/charleston/) - [Kansas City](https://pkdcure.org/blog/global/kansas-city/) - [Long Island](https://pkdcure.org/blog/global/long-island/) - [Philadelphia](https://pkdcure.org/blog/global/philadelphia/) - [Austin](https://pkdcure.org/blog/global/austin/) - [2023](https://pkdcure.org/blog/global/2023/) - [2024](https://pkdcure.org/blog/global/2024/) - [2025](https://pkdcure.org/blog/global/2025/) - [National Capital](https://pkdcure.org/blog/global/national-capital/) - [Twin Cities](https://pkdcure.org/blog/global/twin-cities/) - [Clinical Trials](https://pkdcure.org/blog/global/clinical-trials/) - [2022](https://pkdcure.org/blog/global/2022/) - [Nephrologist](https://pkdcure.org/blog/global/nephrologist/) - [2021](https://pkdcure.org/blog/global/2021/) - [PKD Parents](https://pkdcure.org/blog/global/pkd-parents-communities/) - [South Florida](https://pkdcure.org/blog/global/south-florida/) - [Blog](https://pkdcure.org/blog/global/blog/) - [Pittsburgh](https://pkdcure.org/blog/global/pittsburgh/) - [Baltimore](https://pkdcure.org/blog/global/baltimore/) - [2026](https://pkdcure.org/blog/global/2026/) - [New England](https://pkdcure.org/blog/global/new-england/) - [Press Release](https://pkdcure.org/blog/global/press-release/) - [Northeast Ohio](https://pkdcure.org/blog/global/northeast-ohio/) - [PKD Thrive](https://pkdcure.org/blog/global/pkd-thrive/) - [Houston](https://pkdcure.org/blog/global/houston/) - [Salt Lake City](https://pkdcure.org/blog/global/salt-lake-city/) - [Chicago](https://pkdcure.org/blog/global/chicago/) - [Atlanta](https://pkdcure.org/blog/global/atlanta/) ## Categories - [ADPKD](https://pkdcure.org/blog/categories/adpkd/) - [Living with PKD](https://pkdcure.org/blog/categories/living-with-pkd/) - [Transplantation](https://pkdcure.org/blog/categories/transplantation/) - [PKD Parents](https://pkdcure.org/blog/categories/pkd-parents/) - [Dialysis](https://pkdcure.org/blog/categories/dialysis/) - [ARPKD](https://pkdcure.org/blog/categories/arpkd/) - [Caregivers](https://pkdcure.org/blog/categories/caregivers/) - [PKD Youth](https://pkdcure.org/blog/categories/pkd-youth/) - [Just Diagnosed](https://pkdcure.org/blog/categories/just-diagnosed/) - [A to Z definitions](https://pkdcure.org/blog/categories/a-to-z-definitions/) ## Quotes Categories - [Clinicians & Researchers](https://pkdcure.org/blog/quotes_categories/clinicians-researchers/) - [Donors](https://pkdcure.org/blog/quotes_categories/donors/) - [Centers of Excellence](https://pkdcure.org/blog/quotes_categories/centers-of-excellence/) - [Community Engagement](https://pkdcure.org/blog/quotes_categories/community-engagement/) - [Global](https://pkdcure.org/blog/quotes_categories/global/) - [Community Development](https://pkdcure.org/blog/quotes_categories/community-development/) ## Types of Center - [Centers of Excellence](https://pkdcure.org/blog/type-of-center/centers-of-excellence/) - [Partner Clinics](https://pkdcure.org/blog/type-of-center/partner-clinics/) - [Pediatric Centers of Excellence](https://pkdcure.org/blog/type-of-center/pediatric-centers-of-excellence/) - [Pediatric Clinics](https://pkdcure.org/blog/type-of-center/pediatric-partner-clinics/)