Online Health and Support Resources

Genetic, Rare and Orphan Disease Resources Online

  • GeneReviews
    www.ncbi.nlm.nih.gov/sites/GeneTests/review?db=GeneTests
    Searchable database of genetic diseases, including detailed description, diagnosis, management, counseling and testing issues. Hosted by GeneTests/GeneClinics.

  • Genes and Disease
    www.ncbi.nlm.nih.gov/books/NBK22185/
    Information about disorders caused by a single gene. Diseases are categorized by functional disorder (e.g., immune system, nervous system, metabolic disorders). Hosted by National Center for Biotechnology Information (NCBI) of the National Library of Medicine (NLM).

  • Genetics and Rare Conditions Site
    www.kumc.edu/gec/support
    Alphabetical index of genetic disorders with links to disease-related associations, support groups, foundations, online discussion groups and listservs. Hosted by the University of Kansas Medical Center.

  • Genetics Home Reference - National Library of Medicine
    http://ghr.nlm.nih.gov
    Consumer information about genetic conditions and the genes responsible for those conditions

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Last Updated: September 16, 2011