Information about Rare Genetic Diseases
From WikiAdvocacy
- 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
Internal Links
- Advocacy Organizations List
- Advocacy Resources
- Assistive Technology
- BioBanks
- Blogging
- Children's Hopes and Dreams Foundations
- Consumer Medical Information
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- Fundraising
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- General Resources
- Matching Resources
- Meet Your Neighbors & Organizations
- Publications
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- Sibling Support
- State Registration
- Travel
