Fragile X Syndrome

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Fragile X Syndrome

 Updated 5/2004

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Although fragile X syndrome is the most common inherited cause of mental retardation, it is relatively unknown and often misdiagnosed. Check these sites for more information.

 

Carolina Fragile X Project
Based at the Frank Porter Graham Child Development Center, this site includes information about the syndrome, including research studies, family and child experiences, behavior issues, intervention strategies, and services.
 

Facts about Fragile X Syndrome
A very good overview from the National Institute of Child Health and Human Development.
 

Fragile X Syndrome
This report from The Arc (in pdf format only) discusses the genetic aspects of fragile X syndrome.
 

FRAXA Research Foundation
FRAXA is a nonprofit organization run by parents and medical professionals to fund medical research aimed at finding a specific treatment for fragile X. Its web site provides extensive information about the syndrome, research news and grant opportunities, and information about the organization and its chapters.
 

National Fragile X Foundation
Geared primarily for parents and prospective parents, this nonprofit’s site features information about Fragile X syndrome, family issues, testing, education, therapy, medication, resources and links. A short on-line video is included.
 

Related Subjects
Mental Retardation

Rare Disorders

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