Since 1982, the PKD Foundation has allocated nearly $28 million to dedicated PKD research, clinical and scientific grants, fellowships, and conferences. This sustained financial investment has yielded tangible outcomes at local, national, and global scales. This includes implementing funding opportunities for emerging investigators, support for innovation, and leveraging funding from prestigious institutions such as the National Institutes of Health and the Department of Defense.
The PKD Centers of Excellence program is based on the belief that the best way to provide PKD-centered care is through patient-focused, comprehensive care coordinated and support by an integrated care team.
The ADPKD Registry is patient-powered and patient-centered. You’ll answer questions about your health and PKD’s impact on your life to help create an essential resource for researchers to develop better outcomes that reflect patient perspectives.
Get the PKD Handbook
We are proud to offer both a digital and print version of the information packet and patient handbook at no cost to you.
What We Do
WE GIVE HOPE. We fund research, advocate for patients, and build a community for all impacted by PKD.
Get Connected
Whether you’re looking for community or to volunteer, there are countless ways to get connected.
Grants & Funding
We’ve proudly leveraged over $1B in federal research funding and dedicated $28M in PKD Foundation research project funding.
Treatment Pipeline
Learn about the treatments for PKD currently being developed in the United States.
Fellowships
To move us forward in finding treatments, we select outstanding researchers as recipients of PKD Foundation fellowships.
Resources for Patients
- Diet
- Family Life
- Living with PKD
- Recipes
- Staying Healthy
- Advocacy
- Communities
- Education
- Living with PKD
- ADPKD
- ARPKD
- Caregivers
- Education
- Living with PKD
- Newly Diagnosed
- Research
- The Basics of PKD
- ARPKD
- Diet
- Family Life
- Living with PKD
- PKD Parents
- Staying Healthy
- Young Children
- ADPKD
- ARPKD
- Diet
- Living with PKD
- Newly Diagnosed
- Research
- Staying Healthy
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 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 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 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.
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
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 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 specifically for young adults with PKD and for parents with children with PKD. Additionally, our PKD Connect Peer Mentors can provide you resources, guidance, motivation, and emotional support.
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
Contact Us
Have a question, comment, or concern? Reach out today.
pkdcure@pkdcure.org 816-931-2600
1001 E. 101st Terrace, Suite 220 Kansas City, MO 64131