Share Your Story
Your experience can encourage others and help raise awareness about congenital kidney conditions. Whether you’re a patient, parent, or caregiver—your story matters.
Enter your name and email, and share a brief message if you’d like. Our team may follow up with you for details. You can return to the Get Involved page anytime to explore more ways to help.
Why we ask for stories
Stories do two jobs that data cannot. They show other families — often newly diagnosed and searching at two in the morning — 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 does not. We have found that rooms full of people who make decisions about research funding respond to the first in a way they do not to the second.
You stay in control of it
You choose how much to share and how it is used, and you can change your mind later. If you would rather your story only informed our work and never appeared anywhere publicly, that is a normal thing to ask for and we will honour it.
There is no right kind of story
It does not have to be dramatic or resolved. The ordinary parts are often the most useful — what the first appointment was like, what nobody warned you about, what you wish had existed when you were looking. Short is fine. A few paragraphs is plenty.
Who it is for
Parents, adult patients, siblings, and people who were diagnosed as children and are now grown. If a congenital kidney condition has shaped your family’s life, your account of it is worth having.
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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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.