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Children's Hospital of Pittsburgh
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Children's Hospital of Pittsburgh

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 FoundationThe National Fragile X Foundation (NFXF) 
1861 International Drive, Suite 200
McLean, VA 22102
800-688-8765
E-mail: contact@fragilex.org

The NFXF has been serving the Fragile X community since 1984. Its Mission is to serve the entire Fragile X community to live their best lives by providing the knowledge, resources, and tools until, and even after, more effective treatments and a cure are achieved. Its areas are: Advocacy, Education, Research, and Treatment. Learn more about The National Fragile X Foundation. 

FRAXA Research Foundation

FRAXA Research Foundation
45 Pleasant Street
Newburyport, MA 01950
978-462-1866
978-463-9985 (fax)
E-mail: kclapp@fraxa.org
Web: http://www.fraxa.org/

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. 

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
1-800-370-2943
301-984-1473 (fax)
E-mail: NICHDInformationResourceCenter@mai.nih.gov
Web: http://www.nichd.nih.gov

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: