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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Registration for the 2024 Walk for PKD is now open! Find your walk at walkforpkd.org. |
The PKD Foundation is excited to the announce the newest cohort of Centers of Excellence, Partner Clinics, and Pediatric Clinics. If you are looking for the right healthcare providers to help you manage living with PKD, visit our Centers of Excellence page to learn more about the program and to find a Center of Excellence, Partner Clinic, or Pediatric Clinic.
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.
Janet Gitterman
CO-PKD Connect Ambassador
Contact your local PKD Connect Ambassador to learn about local activities and connect with others in your community that understand what you are going through.
My journey with PKD began fifteen years ago, when I was diagnosed. My father was the first in his family to have this disease, and we recently found out that our son also has it. I am a strong believer in self-advocacy and learning as much as I can about PKD. I have attended National Conventions, state sponsored programs, and PKD walks, and have participated in several clinical trials, including the Tolvaptan study.
I have enjoyed being a PKD mentor and try to lend support and encouragement to people who are also experiencing this disease. I am excited to serve as the PKD Connect Ambassador in New Jersey.
On November 17, 2021, I received a preemptive transplant with my husband as my donor! Post-transplant I have become involved in the NJ Sharing Network, which promotes organ donation. Presently retired, I spent my career as a social worker and art therapist.
Natalie Perrone-Zidziunas
CO-PKD Connect Ambassador
Contact your local PKD Connect Ambassador to learn about local activities and connect with others in your community that understand what you are going through.
My name is Natalie Perrone. I live in Toms River, New Jersey. I was diagnosed with PKD and PLD, 14 years ago. First person to have it in my family. Received a liver and kidney transplant at the Hospital of the University of Pennsylvania, Philadelphia.
Why is volunteering at the PKDF important to you?
To bring awareness of PKD and connect with the community to help share knowledge about this horrible disease. Making a difference in the lives of others struggling with PKD/PLD, so they know they are not alone.
Stacey McClain
PKD Connect Ambassador
Contact your local PKD Connect Ambassador to learn about local activities and connect with others in your community that understand what you are going through.
I’m volunteer because I have been through every phase of having had PKD. I have been in total renal failure,on dialysis for almost 4 years, transplanted now for 8 years and recently had recovered from skin cancer due to the immunosuppressive drugs I am taking. I feel very fortunate to be part of the PKD Foundation and always felt it was so important to pay it forward. The knowledge and life experience I bring hopefully will help others along their journey. We are all in this together. We share the same goal: END PKD!!
Stacey McClain
Walk for PKD Ambassador
Connect with your local Walk Ambassador to learn more about the annual Walk for PKD in your area!
I’m the Walk for PKD Ambassador for New Jersey because I want to know I’m doing everything I can to end PKD. I’m helping my friends, family and community learn more about PKD and have a little fun along the way at the biggest PKD event in the state each year.
Page last updated April 2024
