National Organization for Rare Disorders (NORD)
NORD (rarediseases.org) provides information for patients and families, mentoring for patient organizations, advocacy for the rare disease community, research grants, and patient assistance programs.
NORD has compiled resources that may be useful to individuals and families affected by rare diseases.
The NORD Rare Disease Database provides reports in patient-friendly language on more than 1,200 rare diseases. Each report provides a basic introduction with links to resources for additional information and assistance.
Email firstname.lastname@example.org. Call toll free / voicemail only 800-999-NORD(6673), 203-744-0100,
TTY 203-797-9590. Fax 203-798-2291
55 Kenosia Avenue Danbury, CT 06810
American Academy of Neurology (AAN)
AAN offers a free subscription to their patient-focused magazine, Neurology Now, that provides patients and their caregivers with credible, up-to-the-minute, balanced coverage of the latest advances in neurology research and treatment. Written in concise and easy-to-understand language, the articles help patients make informed decisions about treatment options and living with a wide-range of neurologic disorders.
or 612-928-6000 (International), fax
201 Chicago Avenue
, Minneapolis, MN 55415