Transverse Myelitis Foundation
Founded in 1994, the Transverse Myelitis Association’s goal is to improve the quality of life of individuals diagnosed with rare neuroimmunologic disorders including acute disseminated encephalomyelitis (ADEM).
Offers and provides information about support services such as a newsletter, family camp and support groups
Convenes international symposia on rare neuroimmunologic disorders and funds a clinician-scientist fellowship
The Association's website (myelitis.org) includes information on symptoms, diagnosis, treatment and prognosis of ADEM, a listing of clinical trials, a message forum, and physician network.
email@example.com or 614-766-1806
1787 Sutter Parkway, Powell, OH 43065-8806
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