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.
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.
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
