Information about Rare Genetic Diseases
From WikiAdvocacy
- Genetic Alliance
- 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
- Website: http://www.geneticalliance.org/, especially Disease InfoSearch
- 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
- Website: http://www.genome.gov/10000409
- 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.
- Website: http://rarediseases.info.nih.gov/
- 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
- Website: http://www.rarediseases.org/
- The University of Kansas
- Hosts a comprehensive genetics resource site, which is updated regularly with clinical, research, and educational links.
- Website: http://www.kumc.edu/gec/
[edit] Internal Links
