Resources for information on rare genetic diseases The list below is provided as a reference for anyone seeking information regarding rare genetic diseases. We make no representation as to the accuracy or any other aspect of the information contained on these websites. Online Mendelian Inheritance in Man (OMIM) Genetest (gene testing) eMedicine (free registration may be required): Muscular Dystrophy Association National Organization for Rare Disorders (NORD) Genetic Alliance Global Organization for Lysosomal Diseases (GOLD) National Tay-Sachs and Allied Diseases Association (NTSAD) NIH Genetic and Rare Diseases Information Center National Society of Genetic Counselors Children’s Rare Disease Network The Global Genes Project FDA U.S. Food and Drug Administration Genetics Home Reference National Institute of Neurological Disorders and Stroke, NIH International Pompe Association Association for Glycogen Storage Disease UK Association for Glycogen Storage Disease United Pompe Foundation Canadian Association of Pompe GSDNet (Association for Glycogen Storage Disease) Home About Meet the Crowleys Extraordinary Measures Stay Connected Charitable Links Contact Us About the Crowleys Meet the Crowleys Extraordinary Measures - The Movie Stay connected with the Crowleys Crowley Charitable Links Contact the Crowleys Chasing Miracles Chasing Miracles - The Book FOLLOW US: The Cure - The Book Books about the Crowleys Contact the Crowleys Contact the Crowleys