Welcome to the

Long Island

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.

 

 

Thank you to everyone who attended and supported the 2023 Walk for PKD. Information on the 2024 Walk for PKD season coming soon!

PKD Foundation Centers of Excellence badge in PKD Foundation purpleThe 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