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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!

  • 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.

  • Here, we share the powerful stories of families affected by urea cycle disorders. Each story highlights the strength, resilience, and hope that help guide them through their journey.

  • NUCDF believes that it is critical to invest in clinical research infrastructure to enable us to find safe and effective treatments for UCDs, ensure patient access to expert care, and accomplish our ultimate goal of a cure.

News

June 17, 2025

The National Urea Cycle Disorders Foundation (NUCDF), the leading patient advocacy group for people affected by urea cycle disorders (UCDs), today announced the launch of a two-year national project to establish the multistakeholder NUCDF Partner Network and develop a roadmap for future research in these rare disorders.

May 20, 2025

The first session of NUCDF's new educational series for clinicians, "Urea Cycle Disorders ECHO: The Essentials," featured Lindsay Burrage, MD, PhD and focused on recognition and testing of these rare genetic metabolic disorders.

May 13, 2025

MyRareDiet is a nutrition software application and mobile health tool currently being tested that can be used in research, clinical trials and patient dietary management

 

 

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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