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Welcome to the CAKUT Foundation

We are a parent and patient led, non-profit dedicated to supporting families affected by CAKUT—Congenital Anomalies of the Kidney and Urinary Tract. CAKUT is the leading cause of chronic kidney disease in children, and while common, it remains one of the most overlooked areas in pediatric kidney care.
 

The CAKUT Foundation was born out of a father’s journey to understand his daughter’s condition and the realization that families across the world face similar confusion, isolation, and uncertainty. Though each diagnosis is different, we share a common goal: helping our children thrive and ensuring that better treatments exist for their future.
 

We are proud to foster a growing, engaged community of patients, parents, and professionals who are united in advancing care and finding answers for CAKUT.

Our Mission

The CAKUT Foundation works to improve the lives of children and families affected by CAKUT through:

  • Education: Making complex kidney topics accessible to parents, caregivers, and patients.

  • Empowerment: Connecting families with each other and with tools to advocate for better care.

  • Research: Supporting early-stage innovation in biomarkers, diagnostic tools, and future therapies.

  • Collaboration: Bringing together patients, clinicians, researchers, and industry to advance solutions.
     

All of our resources and programs are free for families. We believe informed, connected communities can change the future of kidney care.

Join Us in the Way That Fits You

We welcome families, patients, researchers, and clinicians to engage with the CAKUT Foundation however they feel most comfortable. We currently offer:
 

  • One-on-one and small group virtual meetings

  • A closed and supportive Facebook group

  • Webinars and videos featuring pediatric kidney experts

  • Monthly e-newsletters with updates and practical tips

  • Parent-created resources reviewed by our Medical Advisory Board

  • Volunteer opportunities, ambassador roles, and storytelling projects
     

We are always growing and learning directly from families how we can best serve this community.

Our Resources

Our website provides parent-friendly content and research-backed guidance to help you:
 

  • Understand different types of CAKUT (e.g. single kidney, hydronephrosis, reflux, etc.)

  • Learn from pediatric nephrology experts and families with lived experience

  • Participate in research and pilot programs

  • Track and support your child’s kidney health

  • Stay informed about future therapies and clinical trials
     

To get started, explore:

  • Beginner’s Guide to CAKUT (Coming Soon)

  • Food & Nutrition Tips for Kidney Protection

  • What to Ask at Doctor Visits

  • Testing 101: What Proteinuria, Creatinine, and Cystatin-C Tell Us

  • CAKUT Voices: Stories from the Community
     

All content is developed with input from parents and reviewed by medical professionals.

Investing in the Future

The CAKUT Foundation directs significant energy toward advancing research and innovation in pediatric kidney care. Although CAKUT is common, few therapeutic programs exist—and even fewer clinical trials.

Our initiatives aim to change that by:

  • Supporting the discovery and validation of early biomarkers 

  • Collaborating on surrogate endpoints that make trials more feasible

  • Building bridges between families, scientists, and industry partners

  • Participating in key nephrology and rare disease conferences

  • Contributing to patient registries and real-world data collection

  • Helping elevate CAKUT as a priority in the kidney innovation ecosystem

We’re proud to be a part of the growing movement to accelerate innovation for children and to ensure that CAKUT isn’t left behind in the search for kidney therapies.

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The CAKUT Foundation is a 501(c)(3) nonprofit organization. All contributions are tax-deductible as allowed by law.

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A Letter From Our Co-founder

When my daughter was born, she had only one functioning kidney. After countless hospital visits and a surgery in her first year, we were told everything looked okay for now. Like many families, we were advised to simply monitor things over time.
 

But as the years passed and labs began to shift, I started asking harder questions. What happens later in life? What therapies are available to protect her kidney? And why does it seem like so many children with similar conditions slowly go downhill, without any clear plan to stop it?
 

That search led me to the term CAKUT and a realization that, despite how common it is, this condition still lives in the shadows. Families weren’t connected. Research was fragmented. And because the CAKUT community had no unified voice, innovation was falling behind.
 

The CAKUT Foundation was created to change that. To bring families, clinicians, and researchers together. To give parents the knowledge and tools I wish we had earlier. And to accelerate research and treatment options that can truly protect kidney health—starting in childhood and rest of life.
 

We are early in this journey, but we are growing quickly. And I truly believe that by uniting our stories, sharing our knowledge, and aligning our efforts, we can change what’s possible not just for our kids today, but for every generation to come.
 

Thank you for being here. I hope you’ll join us.
 

Vincent Ko
Co-Founder, CAKUT Foundation
 

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