Get Involved
From diagnosis to discovery, families, doctors, and allies are uniting to change the future of congenital kidney care. By joining KidneyFuture, you become part of a movement dedicated to improving lives and advancing research.
Why your perspective matters here
Congenital kidney conditions are rare enough that most research decisions get made without anyone in the room who has lived through a diagnosis. We think that’s backwards. The families who have sat in the appointment, the clinicians who have delivered the news, and the researchers trying to build better options all hold a piece of the same picture, and the work moves faster when they’re actually talking to each other. That’s what joining KidneyFuture means: not a mailing list, but a seat at the table where the questions get chosen.
The Parent & Patient Council
The Council is where families shape what KidneyFuture builds. Members review the resources we’re 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.
You don’t need medical knowledge or advocacy experience. If you’re raising a child with a kidney condition, or you grew up with one yourself, you already have what we’re asking for. Express interest and we’ll follow up with what participation actually looks like, so you can decide with the details in front of you.
Clinicians and researchers
Clinicians who work with us help make sure our materials are accurate before families rely on them, and help us understand where the real gaps in care sit. In return you get a direct line to a patient community that is organized and reachable, which matters when you’re trying to recruit for a study, understand how families are actually managing at home, or find collaborators working on the same conditions. Our medical advisory committee and our research collaborations both grew out of clinicians who started by simply getting in touch.
Sharing your story
Stories do two jobs that data can’t. They show other families, often newly diagnosed and searching at 2am, that someone has been here before. And they give us something concrete to put in front of researchers, regulators, and companies deciding where to spend their attention. A specific account of what living with a congenital kidney condition costs a family carries weight that a prevalence figure doesn’t. You choose how much to share and how it’s used, and you can change your mind later.
Parent & Patient Council
Join a supportive community shaping kidney research and advocacy.
Share Your Story
Help raise awareness and inspire others by sharing your experience.
Clinician or Doctor
Contribute your expertise to advance kidney care and research.
Join the KidneyFuture community
Stay connected and help shape what matters most for patients, families, and the kidney community.
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.
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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.