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 FRAXA Research Foundation 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.
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.
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