The National Institute of Child Health and Human Development (NICHD)
The mission of the NICHD is to ensure that every person is born healthy and wanted, that women suffer no harmful effects from reproductive processes, and that all children have the chance to achieve their full potential for healthy and productive lives, free from disease or disability, and to ensure the health, productivity, independence, and well-being of all people through optimal rehabilitation. The NICHD Information Resource Center is your one-stop source for NICHD brochures, booklets, and other materials related to the health of children, adults, families, and populations.
You can contact the NICHD Information Resource Center at:
Mail: P.O. Box 3006, Rockville, MD 20847
The following organizations of families affected by Fragile X are excellent sources of practical information and support. Each of these organizations publishes a newsletter with up-to-date information about current research, conferences, and legislation.
FRAXA Research Foundation
Run by parents, relatives, and friends of those with Fragile X, as well as by medical professionals. Promotes and funds scientific research aimed at the treatment and cure of Fragile X. Publishes a newsletter and other materials, including a CD-ROM, about Fragile X; maintains a Web site and a listserv about Fragile X; and organizes advocacy and fundraising events around the country.
National Fragile X Foundation
Provides information and support to individuals with Fragile X, their families, educators, and health professionals. Funds Fragile X research. Organizes conferences and publishes a quarterly journal. Offers a list of print and other media materials about Fragile X for families and health care professionals. Offers telephone consultation and referrals to medical and genetic services. Manages a consortium of Fragile X clinics. Contains detailed information on its Web site about the causes and treatment of Fragile X and about Fragile X research. Also provides information in Spanish.
- The ARC of the United States—1010 Wayne Avenue, Suite 650, Silver Spring, MD 20910; 301-565-3842; fax 301-565-3843; www.thearc.org
- American Association on Intellectual and Developmental Disabilities—501 3rd Street, NW Suite 200; Washington, DC, 20001; 202-387-1968; fax 202-387-2193; www.aaidd.org .
- Association of University Centers on Disabilities—8630 Fenton Street, Suite 410, Silver Spring, MD 20910; 301-588-8252; fax 301-588-2842; www.aucd.org .
- The Dolan DNA Learning Center, Cold Spring Harbor Laboratory provides clear explanations of the cause, diagnosis, and treatment of Fragile X; www.dnalc.org .
- GeneTests Web site. Funded in part by the National Library of Medicine at the NIH, the Web site provides information on genetic disorders, testing, and contact information for clinical laboratories that do genetic tests; www.genetests.org.
- American Academy of Pediatrics. (1996). Policy Statement: Health Supervision for Children with Fragile X Syndrome. Pediatrics 98(2):297-300. Available online at http://pediatrics.aappublications.org/content/127/5/994.full .
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