Welcome to the
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.
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Thank you to everyone who attended and supported the 2023 Walk for PKD. Fundraising remains open until Dec. 31. Help us reach our goal by donating to your local Walk for PKD today. A cure is our finish line! |
There’s a new way ADPKD Registry participants can step up to provide hope today, and for future generations. The nation’s first dedicated ADPKD Registry is now also one of the first patient registries of any kind to integrate patient-provided health records. Share your health records through your provider’s online portal with a few simple steps on the ADPKD Registry.
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.
Jean Sommer
PKD Connect Ambassador
I have been the volunteering for the St. Louis Community since 2014. I decided to volunteer because, as an ADPKD and PLD patient, I wanted to learn as much as I could about my conditions and I wanted to make a difference in the lives of others.
Learning about PKD and PLD from speakers at local events and national PKD Foundation events, like the PKDCON, also helped me face my fear of these diseases. I was very much at peace when I had my liver transplant in August 2016.
As a PKD Connect Ambassador, I hope that I can help ease the fears of others by providing education meetings for my Community members and rallying them together for our annual Walk for PKD. I was also inspired to volunteer because PKD runs in my family—both my sister and my brother are affected by this disease. In addition, I have two children who each have a 50 percent chance of having PKD. I enjoy organizing the Walk because I want there to be treatments or a cure so that my children, and others, will not have to go through what I have gone through.
Page last updated July 2023