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Public Services Division

Genetic and Rare Diseases

Organizations

Genetic Alliance. Nonprofit network of disease-specific advocacy organizations, universities, government agencies, private companies, and others. Use Disease InfoSearch to find information about diseases, services, and organizations.

Genetic and Rare Diseases Information Center (GARD). Established by the National Human Genome Research Institute and the Office of Rare Diseases Research to answer questions from health professionals, biomedical researchers, and patients.

National Organization for Rare Diseases (NORD). Provides information for patients and families about 1,200 rare diseases. Includes listings to organizations related to specific disorders.

Selected Resources

Fundukian LJ, ed. Gale encyclopedia of genetic disorders. 3rd ed. Detroit: Gale, Cengage Learning; c2010. 2 vols. Entries include demographics when available. References and resources provided for each entry.

Genetics Home Reference (National Library of Medicine). This Website provides consumer information about genetic conditions and the genes or chromosomes related to those conditions. Descriptions for most conditions include information about prevalence.

Pagon RA, Adam MP, Bird TD, et al., eds. GeneReviews [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2013. Expert-authored, peer-reviewed disease descriptions that present information on the diagnosis, management, and genetic counseling of patients and families with specific inherited conditions. Many descriptions include prevalence and/or risk data.

Rare Disease Database [Internet]. Danbury (CT): National Organization for Rare Diseases (NORD); c2013. A subscription version, NORD’s Rare Disease Database (RDB) provides access to 1,200 copyrighted reports on rare diseases that include data on prevalence, if available.

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