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About us

With the help of our Chapters 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.

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

Attendance is virtual and free at PKDCON 2021.

This year’s PKD Connect Conference will bring together patients, caregivers, health care providers, and researchers from the safety of their homes. This virtual event features the latest in research and treatment options while providing opportunities to interact with faculty and other participants.

RSVP at pkdcure.org/conference

Registration for our 2021 Walk for PKD is now open! This year’s 10-day virtual event will bring the best of last year’s Walk and some fun surprises.

Join us on October 8–17, 2021 to help us reach our $1 million fundraising goal to #endPKD. Find your local Walk and register today at walkforpkd.org.

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.

Alex Hagen

Education Coordinator

PKD runs in my family and I want to make a difference by providing the local area with resources and opportunities to connect with one another. It is rewarding to join together and learn more about what we can do to fight PKD through education, nutrition, advocacy, support, fundraising, and research.

Linda Herman

Chapter Coordinator

My husband and I were involved with the PKD Walk when we moved to Portland 16 years ago. We took a break to have a baby, get a transplant, brain surgery for our 5 year old who had a brain cyst, do foster care, adopt our second child, have radiation for a benign brain tumor (myself), and survive 8 more surgeries for complications related to PKD(my husband). After all that we’re back, more determined than ever!
I’m very excited to be part of such an amazing group of people who are committed to finding a cure for this terrible disease! As my husband always says, “there’s always someone much worse than myself”, with that attitude you can accomplish anything!

Page last updated May 2021