Links to Other Resources

Baby using a laptop computer

Fragile X Online Registry With Accessible Research Database (FORWARD)external icon
Funded by CDC, FORWARD is the largest source of data on individuals with fragile X syndrome and their families.

FRAXA Research Foundationexternal icon
FRAXA is a grass roots nonprofit founded and run by fragile X families. Their mission is to accelerate progress toward effective treatments and ultimately a cure for fragile X by directly funding the most promising research. FRAXA also supports families affected by fragile X.

National Fragile X Foundationexternal icon
The Foundation enriches lives through educational and emotional support, promotes awareness, and advances research towards improved treatments and a cure for fragile X.

National Institutes of Health, Office of Rare Diseases Research, Genetic and Rare Diseases Information Centerexternal icon
The Office of Rare Diseases Research (ORDR) answers questions about rare diseases for patients, families, healthcare providers, researchers, students and educators. The ORDR website provides information about National Institutes of Health-sponsored biomedical research, scientific conferences, and rare and genetic diseases.