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We know Urea Cycle Disorders. We live to conquer them.

The National Urea Cycle Disorders Foundation is the only nonprofit organization in the world solely dedicated to saving and improving the lives of children and adults from the catastrophic effects of urea cycle disorders. Formed in 1988 by a handful of parents whose children were affected, NUCDF has grown to be an internationally recognized leader in the fight to conquer urea cycle disorders (UCD) and raise awareness that saves lives. NUCDF is the driving force behind critical research to improve the understanding and management of UCD, find new treatments, and ultimately a cure. NUCDF serves as a lifeline to UCD patients, families, and medical professionals worldwide seeking information, support, and HOPE. Learn more and get involved.

TOGETHER, WE CAN CONQUER UCD. COME JOIN US!

  • The 2026 Cure the Cycle Challenge is more than a ride. It is a movement to create a brighter future for individuals and families affected by urea cycle disorders (UCDs).

    This year, all proceeds from the event will support the Cindy Le Mons Fellowship Grant, a research initiative of the National Urea Cycle Disorders Foundation dedicated to advancing innovative research, supporting emerging investigators, and accelerating progress toward better treatments and outcomes for individuals living with UCDs.

    Research focused on improving patient outcomes and quality of life

  • NUCDF has launched a two-year national project to establish the multistakeholder NUCDF Partner Network and develop a roadmap for future research in UCDs. Learn more, follow project news and apply to join.

  • We are excited to announce we are partnering with Project Echo to host a new educational series for clinicians, Urea Cycle Disorders: The Essentials.

  • The landscape for the treatment of urea cycle disorders (UCDs) is rapidly evolving, thanks in large part to significant investment from our industry partners. This investment has provided the community with a wide range of treatment and therapy options.

News

July 15, 2026

Update on the NUCDF Partner Network: Year One saw rapid enrollment, broad training, and a lot of listening. With data collection complete, the project now turns to analysis.

May 5, 2026

NUCDF welcomed new nutrition guidelienes and co-hosted a workshop about the unique needs of adults living with inborn errors of metabolism at GMDI, a 2026 conference of metabolic dietitians

April 7, 2026

When the FDA approved pegzilarginase for arginase 1 deficiency (ARG1-D) in 2026, one family's decade-long journey through diagnosis, a clinical trial, and lost access finally reached its destination.

 

 

A group of people in a meeting, sitting in a circle.
  • James A. Bartley, M.D., Ph.D., * Associate Clinical Professor of Pediatrics, Division of Human Genetics, UC Irvine Medical Center
    James A. Bartley, M.D., Ph.D., * Associate Clinical Professor of Pediatrics, Division of Human Genetics, UC Irvine Medical Center

    NUCDF is the driving force in raising awareness of urea cycle disorders in the medical community throughout the United States. The NUCDF has led the way in shortening the time between onset of symptoms and the time of diagnosis of a urea cycle disorder. I have witnessed the increased hope and confidence of parents in caring for children with urea cycle disorders after the family has contacted the NUCDF.

Our Impact

For the past 30 years, NUCDF has been the driving force for raising awareness of UCD, improving diagnosis and treatment, and catalyzing pioneering research that saves and improves the lives of infants, children and adults with urea cycle disorders. Our donors make it all possible. Visit Our History page to see the impact your support can make. 

NUCDF Partnerships, Memberships and Recognitions:

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