Whether your patients are newly diagnosed or have been living with NAGS deficiency for some time, they or their caregivers are likely to have many questions and concerns. The resources below are appropriate for your practice as well as your patients.
The National Urea Cycle Disorders Foundation (NUCDF) is dedicated to the identification, treatment, and cure of urea cycle disorders. NUCDF provides information and education for families and physicians. NUCDF offers two support programs for families: a mentor program, which matches newly diagnosed families with a mentor from the UCD community; and a networking program, which enables UCD patients and families to communicate with each other.
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.
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.
The Urea Cycle Disorders Consortium, part of the Rare Diseases Clinical Research Network founded by the National Institutes of Health, enables a large-scale collaborative effort to develop new research-based strategies and methods for diagnosis, treatment, and prevention of illness and disability resulting from urea cycle disorders. The consortium provides ways for patients to join with physicians and researchers through participation in research studies.