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.
2024 Long Island
Walk for PKD
Saturday, September 21
Holtsville Ecology Center
Registration/site opens: 9:15 a.m.
Join us this fall and be a part of the largest gathering of the PKD community.
Sign up today and bring treatments to patients faster with 100% of each donation funding life-saving research at
walkforpkd.org/longisland.
If you have questions, email us at longislandwalk@pkdcure.org.
Susan R. Knafel Polycystic Kidney Disease Center
Open House for the PKD Community
Meet Rogosin’s PKD care team and others with PKD. Share experiences and ask questions. Featuring two small group sessions:
Discussion topics:
Havine a PKD-free child
Tolvaptan tips and tricks
Preparing for living with a kidney transplant
Tips for those newly diagnosed with PKD
Talking to your children with a 50% chance of having PKD
PKD issues beyond the kidney
Nutrition in PKD
Psychological aspects of PKD
For more information, download our flyer.
Event Details
Sunday, September 22, 2024
2-4 pm eastern
505 East 70th Street, 2nd floor
Please RSVP by September 8
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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.
Gillian Kolodny
PKD Connect Ambassador
Walk for PKD Ambassador
My family and PKD have a long history. Starting with my grandfather and possibly his father, it has stolen family members way before their time. It is also quite prevalent. The last two generations have seen the disease pass down to 100% of the children in the family. In 2003, I began volunteering with the PKD Foundation as we began the Long Island Chapter. It’s been an incredible journey so far! I feel quite blessed to have met so many wonderful people through the Foundation. We affectionately call ourselves “The Little Chapter That Could”. Since joining together, we have had a PKD awareness news program, were able to get the local and state legislature to reserve a day as PKD Awareness Day, and continue to support countless families as they begin to understand and move through their own journeys with PKD. We have members in all stages of PKD which makes it helpful when others need support. Banding together to raise funds and awareness to stand up to PKD is our focus. Being here to support one another is paramount! We hope to meet you soon. Please reach out if you’re living on Long Island, and if you’re interested in speaking with others living with PKD.
Page last updated February 2024
