Resources and Educational Tools

For further information and resources regarding Fragile X Syndrome, call, write, or visit the following organizations and request a copy of their newsletter or other publications.

The National Fragile X Survery

Take part in The National Fragile X Survey 
The National Fragile X Survey will look at how fragile X affects families. The survey will be the first to gather national data from families that can be used to inform policy and improve practice.

Resources from the National Fragile X FoundationNational Fragile X Foundation 
P.O. Box 190488-0488
San Francisco, CA 94119-0488
800-688-8765; 510-763-6030
510-763-6223 (fax)

The mission of the National Fragile X Foundation is to promote education and research of Fragile X syndrome, and disseminate information and new findings. The Foundation holds a bi-annual conference that is an opportunity to share and exchange the latest information and research for Fragile X Syndrome. Publishes a newsletter, The Foundation Quarterly. Offers a list of print and other media materials.

View Resources from the National Fragile X Foundation

FRAXA Research Foundation

FRAXA Research Foundation
45 Pleasant Street
Newburyport, MA 01950
978-463-9985 (fax)

A national nonprofit organization that funds research aimed at finding a treatment or cure for Fragile X Syndrome. Publishes a quarterly newsletter, FRAXA Update, as well as other materials. Maintains a Web site and lists about Fragile X; and organizes advocacy and fundraising events around the country.

Conquer Fragile X Foundation

Conquer Fragile X Foundation
189 Bradley Place, Suite 1
Palm Beach, FL 33480
877-275-1192 (fax)

Seeks to create strong, dynamic linkages between Fragile X researchers in the U.S. and abroad. Supports Fragile X research projects and encourages creative approaches to strengthen the body of Fragile X research through cooperation and coordination of research efforts.

The National Institute of Child Health and Human Development

The National Institute of Child Health and Human Development (NICHD)
P.O. Box 3006
Rockville, MD 20847
301-984-1473 (fax)

The NICHD Information Resource Center is a source for NIHD brochures, booklets, and other materials related to the health of children adults, families, and populations.

Dolan Learning Center

Dolan Learning Center - Your Genes Your Health

This site is a multi-media guide to genetic disorders.

Need Individual Education Program (IEP) Help?  

Check out information about general education resources, IEP websites, and IEP books/DVDs. Go to The National Fragile X Foundation website.

Additional Resources: