National Institutes of Health U.S. Department of Health and Human Services
NIH UNI Study: Urea Cycle Disorders, Nutrition and Immunity
Online Resources for UCD
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General UCD resources
Urea Cycle Disorder Overview on GeneReviews [ncbi.nlm.nih.gov] GeneReviews are expert-authored, peer-reviewed, current disease descriptions that apply genetic testing to the diagnosis, management, and genetic counseling of patients and families with specific inherited conditions.
Urea Cycle Disorders Consortium [rarediseasesnetwork.epi.usf.edu] The Urea Cycle Disorders Consortium is a team of doctors, nurses, research coordinators, and research labs throughout the United States, working together to improve the lives of people with Urea Cycle Disorders. The purpose of this consortium is to provide a way for patients to join with doctors and researchers by participating in research studies.
Specific UCD resources - detailed descriptions of each UCD
ClinicalTrials.gov ClinicalTrials.gov is a registry and results database of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov lists information about a trial's purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals". To search for research studies related to UCD, type "urea cycle disorders" (or the name of a specific UCD) in the search box.
General Support Organizations
Genetic Alliance [geneticalliance.org] The Genetic Alliance is the world's leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities.
The National Organization for Rare Disorders (NORD) rarediseases.org] NORD is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
Madisons Foundation [madisonsfoundation.org]
Madisons Foundation is dedicated to improving the quality and quantity of information available to parents of children with rare, life-threatening diseases, and to facilitating effective communication among parents, physicians and medical experts.
The Arc [thearc.org] The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.