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Online Resources
NOTE: NHGRI does not endorse or recommend any commercial products, processes or services. The links listed on this Web page do not necessarily state or reflect the views of the U.S. government, and their inclusion here may not be used for advertising or product endorsement purposes.
General IEM resources
- Urea Cycle Disorders Overview
From the GeneReviews Web site: "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". - National Urea Cycle Disorder Foundation (NUCDF)
- Organic Acidemia Association
- FOD (Fatty Oxidation Disorders) Family Support Group
- MSUD Family Support Group
- United Mitochondrial Disease Foundation
- Rare Diseases Network
Research Studies
General Support Organizations
- Genetic Alliance
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.
- NORD
National Organization for Rare Disorders (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.
- The Madisons Foundation
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
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.
