Rare Syndromes and Disorders

Info in English on Rare Disorders

Looking for information on a rare disorder?
Contact any or all of the following:

• the National Organization for Rare Disorders (NORD), at 1.800.999.6673, and:
  www.rarediseases.org
• the Office of Rare Disorders at the National Institutes of Health, at:
  http://rarediseases.info.nih.gov/
• the Genetic and Rare Diseases Information Center, which is a part of the Office of Rare Disorders and which answers questions from the general public, including patients and their families, health care professionals and biomedical researchers. Call toll-free at: 1.888.205.2311 (Voice), 1.888.205.3223 (TTY).
• DiseaseInfoSearch, for information on specific genetic conditions, at: http://geneticalliance.org/ws_display.asp?filter=diseases

Info in Spanish on Rare Disorders

• Spanish Information on Disability Conditions (English version)
  www.nichcy.org/resources/spdisabconditions.asp#rare
  Part of NICHCY's stand-alone pages on Spanish materials on disability conditions includes a listing of Spanish language resources on rare syndromes/disorders. (Note: For our Spanish speaking users, we also offer this resource page completely in Spanish, below.)
• The Spanish version---Informacion en Espanol sobre Discapacidades Especificas.
  www.nichcy.org/resources/sp-spdisabcond.asp#rare
  NICHCY se complace en conectarle a fuentes de informacion en espanol sobre Sindromes/Desordenes Raros. Presentamos esta pagina en espanol para nuestros usuarios hispanohablantes.