Welcome to the

PKD Parents

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 U.S. and millions worldwide.

About us

The PKD Parents Chapter has been serving parents of children with ARPKD and ADPKD since 2000. The PKD Parents Chapter offers support, compassion, and guidance, and helps connect families with experts and other local PKD families. To contact our volunteer Chapter Coordinator, Michele, email pkdparents@pkdcure.org.

Email volunteers@pkdcure.org for more information and to get involved.

The 2022 Walk for PKD launches in May. Watch the Walk for PKD webpage for more updates. We look forward to you joining us for an exciting year of fundraising to support PKD research. A cure is our finish line!

The PKD Connect Conference (PKDCON) is an annual event that brings together every part of the PKD community—from patients and caregivers to researchers and physicians—to provide education, research updates, resources, and networking opportunities.

Virtual and free to attend this year, PKDCON 2022 will provide a rich educational experience, meaningful interactions with other participants, and engaging Q&A sessions with faculty.

Join us for our second virtual conference June 24 – 25.

Last year, 1,600 attendees from over 40 countries joined us for our two-day virtual event. Register today to learn alongside PKD community members just like you. Register now!

Now, as always, the PKD Foundation is committed to our mission of giving hope, advocating for patients, and building a community for all impacted by PKD. We'll continue supporting our community by providing important resources and timely updates on social media. If you have questions or need help navigating this unprecedented health crisis, we are here for you. Email or call (844) PKD-HOPE.

If you’re looking for a shoulder to lean on or want to help others from the safety of your home, our Peer Mentor Program is a great resource:

  • Interested in connecting with a mentor? Please take a moment to fill out our mentee survey and our team will follow up with you via email or by phone.
  • Interested in becoming a peer mentor? Please complete our mentor application and a member of our staff will follow up with you by email or by phone.

Michele Karl

PKD Connect Ambassador | PKD Parent Community

Michele Karl is a mom to three boys, her three peas. Max who is 21, Nate who is 18, and Gabe who is 15. Max and Gabe were diagnosed with ARPKD in 2006 after Gabe was born with echogenic kidneys. Michele has been involved with the PKD Foundation ever since. Luckily the boys appear to be on the milder side for ARPKD and currently are both hovering around the 70% range for kidney function. They both also have high blood pressure and Gabe has some mild liver issues. Michele is always available to talk to parents with children with PKD. Besides advocating for her boys Michele is a special education preschool teacher, loves gardening and reading, and likes to make jewelry with vintage objects such as typewriter keys.

Page last updated March 2022

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