Fragile X-Associated Tremor and Ataxia Syndrome (FXTAS): For Patients and Consumers

General Information

• National Fragile X Foundation, Fragile X-Associated Disorders: A Handbook for Families, Health Care Providers, Counselors, and Educators (PDF – 975 KB)
• National Library of Medicine, MedlinePlus: Fragile X Syndrome
• National Institute of Neurological Disorders and Stroke, Tremor Fact Sheet

Services, Resources, and Support

Our Fragile X World
This website is maintained by a community of fragile X families and researchers; it provides information about fragile X syndrome. Information is also collected for periodic surveys.

National Fragile X Foundation
This foundation aims to provide information and advance research toward improved treatments and a cure for fragile X and its associated disorders. The site also has information about genetic counseling and finding a genetic counselor.

• Contact the foundation for more information about fragile X-associated disorders.
• Find a fragile X clinic for treatment or evaluation.
• Join a support network.
• Read "What Is Genetic Counseling?"

FRAXA Research Foundation
This foundation, which is run by fragile X families, aims to accelerate progress toward effective treatments and a cure for fragile X by directly funding research. It supports families affected by fragile X and raises awareness of the condition.

• Toward a cure … What's new?

Worldwide Education and Awareness for Movement Disorders (WE MOVE)
The WE MOVE website maintains information and resources about more than 20 movement disorders.

• Find more information about ataxia.

Please note: Links to organizations and information included on this page do not indicate endorsement from the NICHD, NIH, or HHS.