Childen's Hospital Boston
International Visitorsdotted lineRequest Appointmentdotted lineDirections
 advanced search
About Us Find a Specialist Locations Careers Press Room Giving To
Clinical Services For Patients & Families For Health Professionals Research
My Child Has
or find by letter:  A-F  G-L  M-R  S-Z

Fragile X Program

 Fragile X Program
 Email this page
 Printer Friendly
 Return to
 Genetics
 X
Flower Resources
Support Groups
Image There are a number of support groups throughout the country. The National Fragile X Foundation is an excellent source of information and support for families with children who have fragile X syndrome. Their website is www.fragilex.org. The Fragile X Research Foundation (FRAXA) also provides support for families and raises awareness of fragile X syndrome. In addition, FRAXA funds grants for research that examines treatments and finding a cure for fragile X syndrome. Its website is www.fraxa.org. In addition, your doctor or genetic counselor may be able to put you in contact with another family.

The Fragile X Research Foundataion (FRAXA) and the National Fragile X Foundation are both excellent resources. Both organizations have information about fragile X syndrome and current research on their websites. A list of books and publications are also available on their websites. In addition, both sites have listservs and lists of fragile X organizations. The National Fragile X Foundation also has a list of parent resource groups, including online support groups and parent-to-parent support.

Books and Other Resources
One book recommended by parents of children with fragile X syndrome is Children With Fragile X Syndrome: A Parent's Guide by Jayne Dixon Weber. Randi Hagerman has also put out a good review of fragile X syndrome titled "Lessons from Fragile X Regarding Neurobiology, Autism, and Neurodegeneration." This is a scholarly article published in the Journal of Developmental and Behavioral Pediatrics. The National Society of Genetic Counselors (NSGC) also has an article entitled "Genetic Counseling for Fragile X Syndrome: Updated Recommendations of the National Society of Genetic Counselors." This is available through their website, www.nsgc.org under Practice Guidelines. Your doctor or genetic counselor may have additional resources for you as well.
 X
Contact Us Site Map Privacy Accessibility Give Now en Español