Links to websites of groups that study or provide information about FXTAS.
General Information
- National Library of Medicine, MedlinePlus: Fragile X Syndrome
- National Institute of Neurological Disorders and Stroke, Tremor Fact Sheet
Services, Resources, and Support
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.
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?"
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.
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'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)
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
Please note: Links to organizations and information included on this page do not indicate endorsement from NICHD, NIH, or HHS.
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