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.
New York City Community Meeting
Transplantation
Join us for our upcoming community meeting
via video conference!
Heedeok Han, MD, Hilda Fernandez, MD and Sabrina Ortega, PA from Columbia University will be joining us for a discussion on kidney transplantation.
Bring your questions!
Event Details
Wednesday, October 30, 2024
6:30 pm – 8 pm Eastern
Video conference link will be emailed upon registration.
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
Walk for PKD – Your Way
Walk for PKD – Your Way! is an opportunity to join the nationwide Walk for PKD community in a way that caters to your schedule and interests while keeping things simple. Walk for PKD – Your Way! offers you the freedom to choose – how, when, and where you Walk for PKD. Participate as an individual or a team of loved ones, select a date and decide how you are going to Walk for PKD Your Way. How you raise awareness and funds for PKD research is up to you!
If you have questions, or would like to help with next year’s walk, please reach out to us at walkforpkd@pkdcure.org.
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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.
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
