Fragile X-Associated Tremor and Ataxia Syndrome (FXTAS) Resources

Links to websites of groups that study or provide information about FXTAS.

General Information

Services, Resources, and Support

Our Fragile X World external link

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 external link

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.

FRAXA Research Foundation external link

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.

National Library of Medicine’s MedlinePlus: Movement Disorders

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

Colorado Fragile X Consortium external link

The University of Colorado Medical School-based consortium brings together researchers and clinicians based in Colorado who are advancing the study and treatment of disorders associated with FMR1.

FRAXA Research Foundation external link

FRAXA's mission is to accelerate progress toward effective treatments for fragile X syndrome, and ultimately a cure, by directly funding promising research. FRAXA also supports families affected by fragile X and raises awareness.

FXTAS Guidelines

Berry-Kravism, E., Abrams, L., Coffey, S. M., Hall, D. A., Greco, C., Gane, L. W., et al. (2007). fragile X-associated tremor/ataxia syndrome: clinical features, genetics, and testing guidelines. Movement Disorders, 22, 2018–2030. PMID: 17618523

NICHD

Fragile X Syndrome Research Centers Program

NICHD's IDDB funds three Centers for Collaborative Research in Fragile X and FMR1-related Conditions. These centers are geared toward stimulating multidisciplinary, multi-institutional research and translating basic research findings into clinical practice.

NIH Research Plan on Fragile X Syndrome and Associated Disorders (PDF 440 KB)

National Society of Genetic Counselors (NSGC) external link

A membership organization and information resource for the profession, NSGC aims to advance education, research, and public policy. In 2005, the society released its recommendations regarding fragile X syndrome.

  • McConkie-Rosell, A., Finucane, B., Cronister, A., Abrams, L., Bennett, R. L., & Pettersen, B. J. (2005). Genetic counseling for fragile X syndrome: updated recommendations of the national society of genetic counselors. Journal of Genetic Counseling, 14, 249–270. PMID: 16047089
  • Find a genetic counselor external link

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

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