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.
About us
The PKD Thrive Community was launched in 2022 to bring together young adults with PKD. PKD Thrive offers support, compassion, and a safe place to connect and interact with others that understand where you are in your PKD journey.
Email volunteers@pkdcure.org for more information and to get involved.
PKD Thrive Community Meeting
We are launching a new PKD Community
for young adults with PKD!
Join us for a virtual coffee chat focused on young adults and their experience with PKD (AR and AD). Pop in anytime within the meeting window to join the open discussion and
share what’s on your mind.
This is a supportive space where the PKD community can exchange ideas and make connections.
Event Details
Saturday, june 1, 2024
10 am Pacific, 11 am Mountain, 12 pm Central & 1 pm Eastern
Video conference link will be emailed upon registration.
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Thank you to everyone who attended and supported the 2023 Walk for PKD. Information on the 2024 Walk for PKD season coming soon! |
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.
Sea Krob
PKD Connect Ambassador | PKD Thrive Community
Hi! My name is sea Krob (they/them). I am a visual artist that lives in Los Angeles, California. Of the many hats I wear, some of them are parent, student, artist, partner, public transit rider, photographer, and comic book reader. I am fourth generation of having cystic kidneys with the diagnosis of ADPKD. Somethings I am very passionate about are holding space for hard experiences, processing a diagnosis, and holding space for grief as well as incorporating art into life as
another way to think about the world.
It is important to me to be in conversation with folks impacted with chronic kidney disease. I am chewing over thoughts and ideas around my own body and it is nice to connect with other folks to see what thoughts they have around their experiences. I also am really interested in finding new ways, we as a community, can bring art into our community as a way to share about our journeys and give new language to ourselves for deeper understanding as part of the PKD community. Art can be healing and express thoughts that words are unable to do.
Photo credit to Ashley BohmMoore from
ashleybohm.com
Page last updated June 2023
