Welcome to the

New York City

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.

New York City Community Meeting

Non-kidney related health issues

Join us for our upcoming community meeting via video conference! Dr. James Chevalier from The Rogosin Institute will join us for a discussion on managing non-kidney related health problems associated with PKD.  Bring your questions!

Share your PKD journey and hear from others within the community who understand what you’re experiencing.

Event Details

Wednesday, June 26, 2024
6:30 pm – 8 pm eastern

Video conference link will be emailed upon registration.

 

 

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.

Linda Lebowitz

PKD Connect Ambassador

I am a retired elementary school teacher and love all things having to do with nature! I play guitar and sing in a rock band. My two grown sons are 34 and 24. I was diagnosed with PKD in my 30s after learning that my son had PKD after an irregular urine test. I was adopted so there was no prior family medical information.

It is my pleasure to be able to offer support to others who have PKD. This foundation has been an incredible resource and emotional support for me. I would like to be that for others.

 

Thais Flaitt

PKD Connect Ambassador

It is an immense honor to join the esteemed group of volunteers at the PKD Foundation. As a third-generation PKDer, my journey with polycystic kidney disease has been deeply personal and transformative. Since 2012, I have actively participated in regional community meetings, initially in Omaha, NE, and later in the vibrant community of New York City. Originally hailing from Sao Paulo, Brazil, I have found a second home in NYC, where I currently reside and work. I dedicate my professional life to teaching theater arts to hundreds of public high school students, fostering creativity and self-expression in our vibrant youth. Beyond the stage, my true passion lies in serving others, especially those impacted by PKD. Now, as I step into the PKD Connect Ambassador role with the PKD Foundation, I am eager to leverage the incredible resources and support network available to make a meaningful difference in our local community. Together, with dedication and compassion, I believe we can enhance the lives of those impacted by PKD. With gratitude and enthusiasm, I look forward to contributing to our NYC community!

Volunteering at the PKD Foundation is important to me because it allows me to contribute to a cause that I deeply care about, support individuals affected by PKD like me, and make a meaningful impact in the lives of others.

Page last updated April 2024