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Rare Disorders 
   
 

Looking for information on a rare disorder?

We have a the following suggestions.

1)  Select "Organizations" on the right navigation bar and scroll through the results.  Here you will find that there are many national organizations that focus on specific rare disorders or syndromes.  

2) Contact any or all of the following organizations,

  •  National Organization for Rare Disorders (NORD), at
    1.800.999.6673, and www.rarediseases.org

  •  Office of Rare Disorders at the National Institutes
    of Health, at: http://rarediseases.info.nih.gov/

  •  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

3) Try typing in the name of the disorder in our advanced search page at: 
  http://www.nichcy.org/search/advanced.aspx

 

Readers are encouraged to copy and share this information, but please credit the National Dissemination Center for Children with Disabilities (NICHCY). NICHCY relies on feedback from users to enhance our collection, development, and dissemination of information. We encourage you to share your ideas and feedback with us! Please contact us at our email address (nichcy@aed.org) or visit the NICHCY Feedback Page at: www.nichcy.org/Pages/Feedback.aspx.

NICHCY thanks our Project Officer, Dr. Judy L. Shanley, at the Office of Special Education Programs (OSEP), U.S. Department of Education.

Publication of this Web resource page is made possible through Cooperative Agreement #H326N030003 between the Academy for Educational Development and the Office of Special Education Programs of the U.S. Department of Education. The contents of this document do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government.

NICHCY · P.O. Box 1492 · Washington, DC 20013
(800) 695-0285 v/tty · (202) 884-8441 fax
nichcy@aed.org · www.nichcy.org

 
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