Colorado Fragile X Consortium
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
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.
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
Fragile X Syndrome Research Centers Program
The NICHD's IDD Branch funds three Fragile X Syndrome Research Centers. 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 the NICHD, NIH, or HHS.