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Support and Resources for Individuals with ADEM

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Siegel Rare Neuroimmune Association (formerly knows as Transverse Myelitis Foundation)

The Siegel Rare Neuroimmune Association (SRNA) (wearesrna.org) is a not-for-profit international organization dedicated to the support of children, adolescents, and adults with a spectrum of rare neuroimmune disorders including: Acute Disseminated Encephalomyelitis (ADEM), Acute Flaccid Myelitis (AFM), MOG Antibody-Associated Disease (MOG-Ab disease), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON) and Transverse Myelitis (TM). They support individuals living with rare neuroimmune diagnoses and their families, promote awareness to empower patients, families, clinicians and scientists, build a collaborative and dedicated clinical care network and help advance scientific understanding and research

National Organization for Rare Disorders (NORD)

NORD (rarediseases.org) provides services for patients and their families, rare disease patient organizations, medical professionals, and those seeking to develop new diagnostics and treatments. They support every member of the rare disease community with programs and services focused on one ultimate goal: to improve the lives of individuals and families affected by rare diseases.

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 information related to neurological disorders including ADEM.
  • 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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