Support and Resources for Individuals with ADEM - National Multiple Sclerosis Society

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Support and Resources for Individuals with ADEM

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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.

info@myelitis.org 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 orphan@rarediseases.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

Other resources

  • Medscape Reference provides information on ADEM. You may need to register to view the medical textbook, but registration is free.
  • NIH Office of Rare Diseases Research provides information about ADEM and links to resources.
  • The National Institute of Neurological Disorders and Stroke (NINDS) collects and disseminates research information related to neurological disorders.
  • Orphanet is a database dedicated to information on rare diseases and orphan drugs. Access to this database is free of charge.
  • PubMed is a searchable database of medical literature and lists journal articles that discuss acute disseminated encephalomyelitis.
  • RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.

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