Patients with rare diseases, such as urea cycle disorders, often need additional support and resources. Click below to find out more information.
The National Urea Cycle Disorders Foundation (NUCDF) is dedicated to saving children and adults from the catastrophic effects of UCDs. NUCDF is a leader in the fight to conquer UCD, raising awareness to improve early diagnosis, catalyzing research, and is a vital resource of information and education for families and doctors. NUCDF is a lifeline for affected families seeking guidance and support, providing mentors for newly diagnosed families and networking UCD families together for support.
The Urea Cycle Disorders Consortium, part of the Rare Diseases Clinical Research Network founded by the National Institutes of Health, is a team of doctors, nurses, and researchers working together to improve the lives of people with UCDs through research and education. The purpose of the consortium is to provide ways for patients to join with doctors and researchers through participation in research studies.
The National Organization for Rare Disorders (NORD) is dedicated to helping people with rare diseases. NORD provides information and resources for families, as well as ways to connect with others and get involved in the rare diseases community.
Genetic and Rare Diseases Information Center (GARD) of the National Institutes of Health provides information for individuals with genetic and rare diseases, their families, and others.