Fragile X Syndrome

Fragile X syndrome is the leading known inherited cause of mental retardation. The condition is due to a lengthening of a gene on the X chromosome, one of the set of chromosomes which determine the gender of a person.

The lengthening of the Fragile X Mental Retardation gene (FMRP1) shuts off the ability of brain cells to make a protein necessary for normal brain functioning. The effects of the shortage or lack of this protein range from mild learning disabilities to severe autistic tendencies.

There is no cure for fragile X syndrome, but many early intervention therapies and newer medications can help alleviate some of the effects and allow many persons to lead productive lives.

Fragile X syndrome is a fertile research area in the booming field of genetics. Therefore, there is much more information available than a few years ago. This page guides you to some of the major fragile X sites on the web, starting with major sites in the U.S., both national and regional and then listing sites originating from other countries. Finally, a few general informational links are listed.

Fragile X syndrome is just one of many developmental disabilities. Because many persons affected by fragile X have autistic-like symptoms, it is often listed among the autism spectrum disorders.

National Sites - U. S.

National Fragile X Foundation
The National Fragile X Foundation is the oldest advocacy group on fragile X syndrome. This site contains a comprehensive overview of fragile X syndrome as well as summaries of the latest research from the biennial international conference it sponsors. Much of the information is of great practical value to parents and professionals alike.

FRAXA Research Foundation
FRAXA is a foundation of parents dedicated to research to find a cure for fragile X syndrome. Basic information is available in a number of other languages. This site also contains instructions for joining a free e-mail list of parents and professionals who support each other and exchange information about fragile X. Another excellent source of information.

Local & Regional Support Groups

This is by no means a comprehensive list, but contains sites that are particularly good or of personal interest.

Fragile X Resource Group of Greater Chicago
This group is the host for the National Fragile X Foundation's 8th International Fragile X Conference, held in Chicago, Illinois, July 17-21, 2002.

The Northern California Fragile X Association

The Fragile X Association of Southern California

Local chapters affiliated with FRAXA

Parent support groups
This is a geographical listing of groups affiliated with the National Fragile X Foundation. Also includes international listings.

International Sites

Asociación Síndrome X Frágil de Argentina

Fragile X Association of Australia

Associação X Fragil do Brasil
Two Brazilian Fragile X groups.

Fragile X Research Foundation of Canada
In English, French, and Portuguese.

MOSAÏQUES Association des "X Fragile"
French site.

Interessengemeinschaft Fragiles-X e.V.
German Parents Group. Some translation from German to English.

Irish Fragile X Society

Nederlandse Fragile X Website (Dutch)

La Federación Espanola de Asociaciones del Síndrome X Frágil
Spanish federation of associations. See also the following regional sites in Spain:
Associació Catalana Síndrome X Frágil
Asociación Síndrome X Frágil de Madrid

Conquer Fragile X, Inc.
Original emphasis on the Israeli scene, although clearly run from the U. S.

Fraxa Sweden

The Fragile X Society
United Kingdom site - under construction.

Links

GeneClinics article on Fragile X Syndrome
Complete summary of current knowledge on fragile X syndrome. Includes locations of laboratories that test for fragile X.

Your Genes, Your Health: Fragile X Syndrome
Animated presentation with basic information about fragile X syndrome.

Fragile X Syndrome
This site views fragile X syndrome as part of a larger set of conditions related to autism. An impressive collection of links, but little explanation or background material

Fragile X Syndrome
A brief overview article written by Stephen M. Edelson, Ph.D. of the Center for the Study of Autism, Salem, Oregon

PubMed Query on Fragile X
The latest scholarly articles on fragile X.

Additional listings of links:
National Fragile X Foundation
Fraxa