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 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!
-
New UCD Research App Now Available!
NUCDF is proud to announce the launch of a new app to inform the UCD community—families and providers—about the results of the Liver Transplant vs. Medical Management for Urea Cycle Disorders study. -
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.
-
James A. Bartley, M.D., Ph.D., * Associate Clinical Professor of Pediatrics, Division of Human Genetics, UC Irvine Medical CenterNUCDF 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. Take a look at the impact your support can make.
In the News
Five months after his death, Robbie Roper's family reveals that his tragic passing was caused by an undiagnosed urea cycle disorder. Robbie received corticosteroids - a known trigger for hyperammonemia - during shoulder surgery, leading to fatal hyperammonemia.
NUCDF and the Rare Diseases Clinical Research Network Urea Cycle Disorders Consortium (UCDC) partner to advance research. Read more about the partnership and current research studies.
NUCDF and the Rare Diseases Clinical Research Network Urea Cycle Disorders Consortium (UCDC)co-host the 5th International Scientific Symposium on Urea Cycle Disorders, "Mapping Progress: Current Concepts and New Insights in Urea Cycle Disorders," on September 22-24, 2021. Read more.
UCD experts, Brendan Lee M.D. Ph.D., Sandesh Nagamani M.D., and Andrea Gropman M.D., provide general guidance about COVID-19 vaccines in individuals with UCD and answer questions submitted by our UCD community. Presented in partnership by NUCDF and the NIH Rare Diseases Clinical Research Network Urea Cycle Disorders Consortium (UCDC).
Dr. Maria Elena Bottazzi, internationally-recognized vaccinologist, provides information and answers questions from our UCD community about the development and types of current vaccines, safety and effectiveness. Presented in partnership by NUCDF and the NIH Rare Diseases Clinical Research Network Urea Cycle Disorders Consortium (UCDC).
NUCDF Partnerships, Memberships and Recognitions:
-
-
-
-
-
Child Neurology Foundation Advocacy Award
-
Nord Membership -
Guidstar Platium 2021 -
Genetic Alliance
