PKDCON

Agenda

Speakers

Posters

faqs

Pre-conference sessions

Agenda is subject to change.

Tuesday, April 27

7 to 8 p.m. CDT

COVID-19 Vaccines—Your Questions Answered

Get a jump start on PKDCON by attending the first of three pre-learning sessions, COVID-19 Vaccines—Your questions answered. In this session, we will learn about the FDA approved vaccines currently on the market and answer your questions about these vaccines. We will also take a peek into what we know about life after vaccination for kidney disease patients and transplant recipients.

Learning objectives
  • Summarize general information about COVID-19 vaccine safety and efficacy.
  • Apply the information learned to specific health needs to develop a vaccine action plan.

WATCH SESSION

Tuesday, May 18

7 to 8 p.m. CDT

Nutritional Considerations for PKD Patients

While we all may understand that eating a healthy diet is important to keeping your body as healthy as possible, it can be overwhelming to filter through all the noise and plan for your specific dietary needs. In this session, we will learn the basics of a healthy diet to protect kidneys. We will also take a look into popular diets including plant based, low-carb, paleo, etc., and what you need to know to make sure your diet is meeting your dietary needs.

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.

WATCH SESSION

Tuesday, June 8 

7 to 8 p.m. CDT

Basics of PKD

If you are newly diagnosed or want to learn more about PKD, this session is for you. In this session, we will learn about the basics of ADPKD and ARPKD including basic genetic and clinical aspects of the disease.

Learning objectives
  • Compare the genetics of ADPKD and ARPKD.
  • Describe basic information about PKD
  • List symptoms associated with PKD.

WATCH SESSION

Thursday, June 24 

6 to 7 p.m. CDT

Happy Hour: Intro to Virtual PKDCON

Grab a snack and join us for an introduction to virtual PKDCON! We will demo our virtual platform and provide tips to assist you in getting the most out of the conference.

Friday, June 25

2 to 7:30 p.m. CDT

Help Desk Open

You’ve got questions, we’ve got answers. Stop by the help desk for assistance.

Expo Hall Open

Exhibits are open! Head over to the Expo Hall, visit our virtual booths, chat with representatives, and download materials.

2 to 3 p.m. CDT

Scientific Poster Presentations

Meet PKD researchers and hear about their latest research.

Clinical Trial Showcase

Hear the latest about clinical trial recruitment.

Product Theaters

Hear the latest on products related directly to PKD.

Meet Our Sponsors

Head over to the Expo Hall for the opportunity to speak with our sponsors and exhibitors. Representatives will be available to talk with you via video conference and materials will be available for download.

3 to 4 p.m CDT

Genetic Testing Panel Discussion

Do you have questions about genetic testing? If so, this session is for you. Learn about the types of genetic testing available and the cost associated with genetic testing. Hear from an expert panel, get your questions answered, and hear patients share their experience.

4 to 4:15 p.m CDT

Conference Kick Off and Welcome

Let’s celebrate being together at the PKD Connect Virtual Conference!

4:15 to 5 p.m. CDT

Keynote: Discovering Your Indomitable Spirit

It looked like the clock had run out when Rolf Benirschke collapsed and nearly died on a cross-country flight home after an NFL game.  He would endure two major abdominal surgeries six days apart followed by almost six weeks in the intensive care unit of the hospital where his dad was a physician as he battled ulcerative colitis.  Against all odds, he would return to play seven more seasons with the San Diego Chargers and be honored as the Comeback Player of the Year, the Walter Payton NFL Man of the Year, and play in the Pro Bowl. His experience as a patient motivated him to dedicate his life to patient advocacy and championing the voice of the patient within the medical community.  Rolf’s compassionate spirit and grateful heart shine through in his inspirational story, which will leave you standing in awe at the resourcefulness of the indomitable human spirit. 

5 to 5:15 p.m. CDT

STRETCH BREAK

5:15 to 6 p.m. CDT

Breakout sessions

Post-Transplant—What to Expect

Patients spend a lot of time preparing for a kidney transplant. Getting through the evaluation process can be daunting but once you have done that, what should you expect right after transplant? During this session, we will provide an overview of the information you will receive before you leave the hospital including how often you will need labs and why labs are important to keeping your new kidney healthy, best tips for managing new medications, how often you will need to return to the transplant center for clinic visits, and who to call at the transplant center when you have questions.

Learning objectives
  • Articulate the importance of post kidney transplant care.
  • Describe basic information about what to expect after a kidney transplant.

Emotional Impact of Managing PKD

Managing the emotional impact chronic disease has on your quality of life sometimes takes a back seat to managing all the other important aspects of day-to-day life; prioritizing family, work responsibilities, appointments, etc. But, that does not mean that managing the emotional toll of PKD is any less important and it is vital to your quality of life. In this session, we will discuss how body image, chronic pain and fatigue, depression, and much more can affect PKD patients and suggest coping strategies to ensure the best quality of life.

Learning objectives
  • Recognize the emotional aspects of living with PKD that affect quality of life.
  • List coping strategies that can help improve quality of life.

Dialysis 101

When kidney function declines, dialysis becomes a conversation that you will need to have with your doctor. There are different types of dialysis and many decisions to make when you are considering your options. During this session, you will learn how dialysis works, dialysis options, and how to work with your doctor to make the best decisions about dialysis for you.

Learning objectives
  • Describe how dialysis works.
  • List the types of dialysis available.
  • Prepare for conversations with health care team based on information learned.

Beyond Kidneys—How PKD Affects Your Body

PKD is not just a disease of the kidneys. In this session, learn what your need to know about non-kidney related complications, when you should consult your nephrologist, and what questions you should be asking at your next appointment. In this session, we will discuss aneurysms, PLD and liver issues, gastrointestinal complications, and cardiovascular complications.

Learning objectives

  • Identify PKD as a systemic disease and list organs other than kidneys that can be affected.
  • Evaluate their own symptoms and determine when to talk with their doctor.

Basics of Clinical Care for Children with ARPKD and ADPKD

Making decisions about your child’s care can be a challenge for parents and family members. In this session, we will discuss best practices for clinical care of children with ADPKD and ARPKD.

Learning objectives

  • List symptoms associated with living with PKD in children.
  • Prepare for conversations with health care team based on information learned.

6 to 7 p.m. CDT

networking hour

Would you like to meet others that share your experience and challenges? This hour is for you! Visit the attendee tab and send a message to anyone you would like to connect with. Notice matches that have been selected for you based on your profile. Happy connecting!

Saturday, June 26

10 to 11 a.m. CDT

Meet Our Sponsors

Head over to the Expo Hall for the opportunity to speak with our sponsors and exhibitors. Representatives will be available to talk with you via video conference and materials will be available for download.

11 to 11:45 a.m. CDT 

General session

Latest Research on Nutrition, Metabolism, and Diet in ADPKD

Dr. Katharina Hopp and Dr. Thomas Weimbs will discuss their latest study findings in dietary interventions and ADPKD. We’ll discuss how these discoveries could influence your doctors’ dietary recommendations and learn what’s next in research. This session will be moderated by Dr. Ron Perrone.

Learning objectives
  • Understand the latest research studies in diet and metabolism.
  • Recognize how this research might impact clinical care recommendations.

11:45 a.m. to 12:30 p.m. CDT

Breakout sessions

Family Planning and Achieving Reproductive Success

If you have PKD and are considering a family, you may have questions or concerns. Join us to discuss family planning concerns, risk factors associated with pregnancy for PKD patients, and learn about preimplantation genetic diagnosis (PGD).

Learning objectives
  • Identify concerns for PKD patients and family planning.
  • Understand what PGD is and how it is a family planning option.

Preemptive Transplant Panel Discussion

A preemptive kidney transplant is a transplant performed before the need for dialysis that offers several benefits for the recipient, including better quality of life. Do you have unanswered questions about the best path to a transplant? In this session, our panel will discuss best practices for securing a preemptive transplant, while answering your questions about transplant referrals, the evaluation process, donor testing, and surgical recovery.

Learning objectives
  • Describe the process to preemptive transplant.
  • Determine ideal path toward living donor transplant.

Advocating for Your Child—Communication is Key

Family time, homework, activities…oh my! When do you have time to work in managing health care for your child with PKD? Let’s talk about how to be the best advocate you can be for your child and how to get the help you need as a parent and caregiver.

Learning objectives
  • Develop skills necessary for advocating for child(ren) with PKD.
  • Identify a support system.

Communicating with Your Health Care Team

When managing chronic illness, such as PKD, it is important to have a team of people to help you manage your health needs. In this session, we will discuss building great relationships with your health care team. To do this, you need to understand the health providers that make up your team from primary care to specialists, how best to contact them, and most important — who to call for what! Learn how to prepare for a new appointment, the questions that you need to take with you, and how to leave your appointment with the answers you need.

Learning objectives
  • List health professionals that need to be included as part of health care team.
  • Assess specific health care needs and determine which health care team member should be consulted.

12:30 to 1 p.m. CDT

Food break

Exhibits

Exhibits are open! Grab some lunch and visit our virtual booths in the Expo Hall where you can chat with representatives and download materials.

1 to 1:45 p.m. CDT

General session

Genetics: How Your Genes Impact Your Family Tree

Are you the first in your family to be diagnosed or are your symptoms different from other family members? This session will discuss how your family genetics may cause your experience to be different from others in your family and why some family members may have more severe symptoms.

Learning objectives
  • Explain basic genetics of PKD.
  • Evaluate family tree and understand the role genetics plays in disease progression.

1:45 to 1:50 p.m. CDT

Break

1:50 to 2:35 p.m. CDT

Breakout sessions

Talking About PKD - Patients and Caregivers Share Experiences Talking with Friends and Family

Sharing your PKD diagnosis with others can be difficult. PKD can affect multiple generations in the same family and with each diagnosis, the question of how to talk to others about PKD comes up. In this session, we will hear from patients and caregivers about their experiences talking to family members, children, and friends about PKD.

 

Learning objectives
  • Listen to shared experiences and interpret how these experiences might relate to personal challenges talking about PKD.

Understanding PLD

More than 80% of PKD patients develop cysts on their liver. While it is common in PKD patients, only about 1 in 10 people with PLD experience problems associated with having liver cysts. In this session, the focus will be on complications associated with PLD and clinical management of PLD. 

Learning objectives
  • Describe symptoms associated with PLD.
  • Relate the information learned in this session with specific health care concerns.

Transplantation: From Evaluation to Transplant Surgery

It is important to educate yourself and your family about transplantation so that when the time comes, you are prepared – timing is everything! In this session, we will explain why timing is so important and provide a basic overview of the transplantation process from evaluation through surgery and recovery.  

Learning objectives
  • Describe the transplant process.
  • Recognize when to begin the transplant conversation with health care team.

Understanding Congenital Hepatic Fibrosis (CHF) and Best Practices for Managing Liver Complications in Children with ARPKD and ADPKD

PKD is not just a disease of the kidneys. In this session, we will take a look at congenital hepatic fibrosis (CHF) and other non-kidney manifestations of ADPKD and ARPKD in children.

 

Learning objectives
  • Define CHF and understand how it impacts children with ARPKD.
  • Summarize non-kidney related issues associated with PKD in children.

2:35 to 2:45 p.m. CDT

MINDFULNESS BREAK

2:45 to 3:30 p.m. CDT

Breakout sessions

Pain Management

With PKD, there can be different reasons for pain. What works to alleviate pain for one patient may not work for another. In this session, we will learn causes of pain in PKD patients, the difference between chronic and acute pain, best practices for pain evaluation, and pain management. We will also get an overview of interventional procedures that are available and the risks and benefits associated with these procedures.

 

Learning objectives
  • Generalize the complicated nature of pain management for PKD patients.
  • Understand best practices for managing pain associated with PKD.

Living Your Best Life Post-Transplant

After a kidney transplant, or even before, you may have lots of questions about what life looks like post transplant. Let’s take a look at 6–12 months after a kidney transplant and what your new normal may look like. Can I eat out at my favorite restaurant? Can I travel? How do I adjust my medication schedule across time zones? Do I still need to drink lots of water? When should I contact my transplant team? Let’s address some of the most asked questions!

Learning objectives
  • Recall basic information necessary for keeping your kidney healthy as you adjust to a new normal.
  • Recognize when you need to consult with your transplant team.

Managing Nutrition as Dietary Needs Change from Pre-Dialysis to Post- Transplant

As kidney function declines, dietary needs can change. In this session, we will discuss basic nutrition needs and how these can change as kidney function declines. We will also provide practical tips to help you manage your diet when adjustments need to be made such as how to adjust your favorite recipes and how to best make decisions when you are eating out.  

Learning objectives
  • Recognize the importance of keeping up with your nutrition needs as kidney function declines.
  • Apply information learned in this session to planning for nutritional changes.

Research Session

Since the Foundation’s establishment in 1982, we have invested over $50 million in research projects, grants, and fellowships. Today, we’re encouraged by the significant strides the research community is making to find treatments and ultimately a cure. In this session, we will hear from three PKD researchers and learn about their latest research projects and findings.  

 

Learning objectives
  • Recall information shared about each research project.
  • Demonstrate why the research shared is important to understanding PKD.

How to Talk to Children About PKD

Many PKD parents have shared their feelings about how difficult it is to begin a conversation about PKD with their children. Not only is this a difficult conversation, but how do you know when is the appropriate time? In this session, we will discuss how to have a conversation with a child who has PKD, how to talk to a child about how PKD affects another family member, and how to determine the appropriate information to share.

 

Learning objective
  • Relate the information shared to the needs of the children in your family and feel confident beginning or continuing a conversation about PKD.

3:30 to 4 p.m. CDT

EXHIBITS / MEDITATION BREAK

Exhibits

Exhibits are open and it is time for an energy booster! Take a few minutes to re-energize with two minute moves. Visit our virtual booths, chat with representatives, and download materials.

    4 to 4:45 p.m. CDT

    General session

    Clinical Studies and ADPKD Registry—How You Can Impact Research

    There are more opportunities to impact research for PKD than ever before!  Join this discussion to learn about the importance of participating in clinical trials as an individual with PKD and what being in a study looks like. We’ll also tell you about the studies currently enrolling and what they’re hoping to learn. You will also find out what we are learning about diagnosis, family history, quality of life and outcomes from the ADPKD Registry. 

     

    Learning objectives
    • Understand what a clinical trial is and why participation is important.
    • Identify studies of interest to you.
    • Describe what a patient registry is and why it is important to advancing PKD research.

    4:45 to 4:50 p.m. CDT

    Break

    4:50 to 5:35 p.m. CDT

    Breakout sessions

    Best Practices for Disease Management—Working with Your Health Care Team

    I have PKD. How do I know that I am receiving the best care possible? In this session, we will discuss best practices for disease management and learn about the current FDA approved treatment for ADPKD. We will discuss how often you should see your physician, what to expect during your appointments, and how this might change as PKD progresses. We will also hear from a PKD patient about the importance of advocating for yourself and working closely with your physician as you manage PKD.

     

    Learning objectives
    • Recognize the most important aspects of disease management.
    • Apply the information learned in this session to current disease management plan and determine questions to ask health care team.
    • Articulate the importance of knowing TKV and how this measurement impacts disease management plan.

    Kidney Failure—What to Expect

    Approaching end-stage renal disease (ESRD) is a concern for PKD patients as kidney function begins to decline. Attend this session to learn the signs and symptoms associated with approaching ESRD and learn how to recognize when you should discuss these symptoms with your health care team.

     

    Learning objectives
    • List symptoms associated with approaching kidney failure.
    • Evaluate disease progression and determine if it is time to discuss these symptoms with health care team.

    Caregivers Need Self-Care, Too!

    Remember the rule: put your own oxygen mask on before you assist others? Caring for yourself is one of the most important things a caregiver can do and it is very often forgotten. In this session, we will discuss the importance of self-care and the consequences to your health when self-care isn’t prioritized. We will also discuss practical suggestions for managing care of a loved one with PKD and still taking the time to care for yourself.

     

    Learning objectives
    • Understand the health risks associated with not taking care of themselves as a caregiver.
    • List ideas as to how they might start prioritizing self care.

    Nephrectomy Surgery—Understanding Risks and Benefits

    Whether or not a PKD patient will need a nephrectomy and when is the best time for nephrectomy surgery varies from patient to patient. In this session, we will discuss how common nephrectomy surgeries are in the PKD community, the risks and benefits associated with this surgery, and how to navigate this conversation with your health care team.

     

    Learning objective
    • Describe risks and benefits of nephrectomy surgery.

    Managing Family Life When Your Child Has PKD

    Coping with a chronic illness can be very difficult for the child but also, for the family. From diagnosis to preparing for dialysis or transplant, families go through many challenging times as PKD progresses. This talk will focus on learning coping strategies and parenting when your child has a chronic illness, as well as how to promote positive coping skills in your children.

    Learning objectives
    • Relate the information shared to family’s current needs.
    • List coping strategies that will benefit their family.

    5:35 to 5:45 p.m. CDT

    Energy Break

    5:45 to 6:30 p.m. CDT

    General session

    Updates from the PKD Foundation—Research, Advocacy, and Education

    Join this session to learn the latest in PKD science and drug development and hear what is happening at the PKD Foundation today and into the future.

    6:30 to 7:30 p.m. CDT

    Birds of a feather breakouts

    Patient Round Tables

    Pick a topic and join the conversation! This is a great way to connect with people dealing with the same challenges you are.

     

    • I Have PKD. Now What?
    • Coping with PKD as a Caregiver
    • Considering Living Donation? Hear from a Living Kidney Donor
    • Living Your Best Life on Dialysis
    • Living Your Best Life Post-Transplant
    • Approaching Kidney Failure—Managing Life Through the Challenges
    • ADPKD Parents
    • ARPKD Parents
    • Advocacy

    Agenda is subject to change.

    Page last updated June 3, 2021