Join the Parent & Patient Council (PPC)
Help shape what matters most for patients and families affected by congenital kidney conditions. Share your perspective to support KidneyFuture’s education, research, and community efforts.
Enter your name and email to express interest—we’ll follow up with next steps and more details. You can also return to the Get Involved page to explore other ways to participate.
What the Council actually does
The Parent & Patient Council is where families shape what KidneyFuture builds. Members review the resources we are developing before they go out, tell us where the language misses, and help decide what gets made next.
When we were writing our children’s book, it was Council members who read the drafts and told us whether the story rang true to what their own children went through. That kind of feedback is the difference between a resource that helps and one that sits unread — and it is not something we can produce on our own, however carefully we write.
Who this is for
You do not need medical knowledge or advocacy experience. If you are raising a child with a kidney condition, or you grew up with one yourself, you already have what we are asking for. Parents, adult patients, and grown-up former patients all belong here, and so does the perspective of a family whose experience has been mostly uneventful — that is worth hearing too, and it is under-represented.
What happens after you sign up
Express interest below and we will follow up with what participation actually looks like, so you can decide with the details in front of you rather than committing blind. Signing up here is not a commitment to anything — it starts a conversation.
If now is not the right time
Plenty of families find us in the first weeks after a diagnosis, when there is no spare capacity for anything at all. That is completely reasonable. The Resource Library is free and asks nothing of you, and the Council will still be here later.
Join Parent & Patient Council
KidneyFuture is an official program of CAKUT Foundation Inc., a registered 501(c)(3) tax-exempt nonprofit organization (EIN: 39-3322233). We are dedicated to uniting families, clinicians, and researchers to transform outcomes for those born with kidney disease.
The information on this site is for general educational purposes only and is not medical advice. Always seek the advice of your physician or another qualified health provider with any questions about a medical condition.
Explore
Get Involved
Contact us
CAKUT Foundation Inc. (dba KidneyFuture)
1201 Seven Locks Rd, Ste 360, Rockville, MD 20854
Phone: +1 202-630-0043
Email: [email protected]
(c) 2026. CAKUT Foundation Inc. All Rights Reserved.