Information about Rare Genetic Diseases

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Genetic Alliance
The Disease InfoSearch section is especially resourceful.
4301 Connecticut Avenue, NW
Suite 404
Washington, DC 20008
Phone: 202.966.5557 or 800.336.GENE
Fax: 202.966.8553
Email: info@geneticalliance.org
Genetic and Rare Disease Information Center
Established by the National Human Genome Research Institute, this center provides information to patients, health care professionals, and researchers. They answer requests in both Spanish and English.
P.O. Box 8126
Gaithersburg, MD 20898-8126
Phone: 888.205.2311
TTY: 888.205.3223
Fax: 240.632.9164
Email: gardinfo@nih.gov
National Institutes of Health (NIH) Office of Rare Diseases
Includes a list of patient travel and lodging options, as well as links to current genetic news, clinical resources, recent research and scientific programs, and advocacy organizations.
National Organization for Rare Disorders (NORD)
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Phone: 203.744.0100
Toll-free: 800.999.6673 (voicemail only)
TDD: 203.797.9590
Fax: 203.798.2291
Email: orphan@rarediseases.org
The University of Kansas
Hosts a comprehensive genetics resource site, which is updated regularly with clinical, research, and educational links.
Madison's Foundation
Rare pediatric disease database updated by UCLA medical professionals

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