From Birth to Breakthroughs
Every journey with CAKUT is different but no one should walk it alone. We are here for families, adults, and anyone born with kidney or urinary tract differences — uniting care, community, and research that lasts a lifetime.
From Birth to Breakthroughs
Every journey with CAKUT is different but no one should walk it alone. We are here for families, adults, and anyone born with kidney or urinary tract differences — uniting care, community, and research that lasts a lifetime.
What is CAKUT?
CAKUT stands for Congenital Anomalies of the Kidney and Urinary Tract, differences from birth, like having one kidney or a blockage. While many children grow up healthy, it is the #1 cause of kidney failure in children and a top cause in young adults. We are here to make sure every family is seen, supported, and part of the solution.
Diagnosed with a different kidney or urinary tract? You’re not alone.
Be the first to know about new research, support tools, and community updates for CAKUT families.
What is CAKUT?
Learn about the most common cause of childhood kidney disease and why it deserves lifelong attention.
Support & Resources
Access trusted tools, guides, and stories to help you or your child manage CAKUT at every stage of life.
Advancing Research
We are building a patient powered platform to accelerate CAKUT research, detection, and therapies.
Get Involved
Join the CAKUT movement. Share your story, spread awareness, or support research that drives progress.
Unseen. Understood. Now United.
CAKUT affects millions of children and adults worldwide, yet most have never even heard the name. It is the #1 cause of kidney failure in children, and a leading cause in young adults. There has never been a unifying voice for this community. Until now.
#1
Cause of Kidney Failure in Kids
1 in 500
Births is CAKUT
5 Million
Estimated Worldwide with CAKUT
Inspirational Stories
Sarah Hyland
Star of Modern Family, was born with kidney dysplasia and underwent two transplants. Her resilience and openness continue to inspire families facing congenital kidney challenges.
The Le Family
Their daughter was born with a single functioning kidney. Through collaboration with doctors and thoughtful food choices, the Le family is building a strong foundation for her lifelong kidney health one step at a time.
Dominique Rodgers-Cromartie
Two-time Pro Bowl NFL cornerback, was born with a non-functioning kidney that was removed at age 8. His success on football’s biggest stage shows that kids with CAKUT can defy expectations and achieve greatness.
Resources
Newly Diagnosed?
A quick-start guide for families to understand CAKUT and get the right care from day one.
School & Daily Life Tips
Tools and tips to help kids with CAKUT thrive at school, during play, and daily routines.
CAKUT as an Adult
Learn how CAKUT affects adults from kidney monitoring to fertility, work, and wellness.
Kidney Friendly Eating
Simple, everyday food tips to support kidney health for kids, teens, and adults with CAKUT.
The Best Way to Help? Join Us Below.
We Are Stronger Together. The CAKUT Movement Starts With You.
From diagnosis to discovery, families, doctors, and allies are uniting to change the future of congenital kidney care.
Parents & Caregivers
Learn about the most common cause of childhood kidney disease and why it deserves lifelong attention.
Patients & Survivors
Your story matters. Reconnect, learn more, and help shape the future of CAKUT care.
Doctors & Clinicians
Refer families, access resources, or collaborate on research that improves lifelong outcomes.
Researchers & Industry
Join us in advancing early detection, patient-powered research, and new therapies.
For a Better Future
CAKUT.org is uniting families, doctors, and researchers to change what is possible for congenital kidney conditions. We are building the first patient-powered platform to drive early detection, lifelong support, and breakthrough research, starting at birth and lasting a lifetime. Discover how you can help transform care for millions born with CAKUT.
For a Better Future.
CAKUT.org is uniting families, doctors, and researchers to change what is possible for congenital kidney conditions. We are building the first patient-powered platform to drive early detection, lifelong support, and breakthrough research, starting at birth and lasting a lifetime. Discover how you can help transform care for millions born with CAKUT.
