Fragile X Syndrome Symptoms, Causes, Treatment - Where can I go for more information about Fragile X syndrome? on MedicineNet

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Fragile X Syndrome (cont.)

Where can I go for more information about Fragile X syndrome?

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
Phone: 1-800-370-2943
Fax: 301-984-1473
E-mail: NICHDInformationResourceCenter
@mail.nih.gov
Internet: www.nichd.nih.gov

National organizations

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.

Additional Resources

  • 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 Mental Retardation-444 North Capitol Street, NW, Suite 846, Washington, DC 20001­1512; 202-387-1968 or 800-424-3688; fax 202-387-2193; www.aamr.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 www.aap.org/policy/01493.html.

Patient Comments

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Fragile X Syndrome - Symptoms Question: What symptoms do you or your loved one experience from fragile X syndrome? How do you cope?
Fragile X Syndrome - Carrier Question: Did you ever undergo genetic testing to see if you are a fragile X syndrome carrier?
Fragile X Syndrome - Experience Question: Please describe your experience with fragile x syndrome.
Fragile X Syndrome - Educational Options Question: Do you have a child with Fragile X? Please discuss the educational opportunities in which your child has participated.
Fragile X Syndrome - Social and Emotional Issues Question: How does your child with Fragile X deal with social situations? Please share how you cope with your child's emotional issues.
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