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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.

  • 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.

  • 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

November 4, 2025

The Urea Cycle Disorders Consortium (UCDC), NUCDF's research partner, was recently awarded a no-cost extension to continue its participation in the NIH's Rare Diseases Clinical Research Network (RDCRN). The UCDC, which has been continuously funded under the RDCRN program since 2003, is among the 21 leading rare disease research teams included in the network's fifth funding cycle.

October 31, 2025
byNUCDF

At the National Urea Cycle Disorders Foundation (NUCDF), our mission has always been to connect, support, and advocate for families affected by Urea Cycle Disorders. Today, we are sharing an important update from our partners at the National Organization for Rare Disorders (NORD) regarding their UCD Patient Assistance Program.

October 20, 2025

NUCDF recognizes that there is uncertainty regarding generic glycerol phenylbutyrate. We have heard the concerns expressed by the patient community regarding the timing and availability of generic options and what impact that may have on patient access to these lifesaving medications.

 

 

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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