Fragile X Program Patient Resources

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  • Childhood Apraxia of Speech Association of North America (CASANA) is a national non-profit organization committed to advocating the needs and interest of children and families affected by apraxia(the inability or impaired ability to perform task or movements).
  • The FRAXA Research Foundation provides support for families and raises awareness of fragile X syndrome. In addition, this non-profit organization funds grants for research that examines treatments and finding a cure for fragile X syndrome.

  • The Fragile X Clinic and Research Consortium (FXCRC) is comprised of researchers and providers at fragile X clinics located throughout the United States and Canada.  The FXCRC has developed consensus documents for various issues seen in fragile X syndrome, including hyperarousal, medications, toileting, and educational guidelines.

  • The Fragile X Program at Boston Children's Hospital works closely with a number of LINKS (Linking Individuals Nationally in Knowledge and Support) groups in New England.  LINKS groups are associated with the National Fragile X Foundation.

  • Children With Fragile X Syndrome: A Parent's Guide by Jayne Dixon Weber is one book recommended by parents of children with Fragile X syndrome

  • “Lessons from Fragile X Regarding Neurobiology, Autism, and Neurodegeneration” by Randi Hagerman is a scholarly article published in the Journal of Developmental and Behavioral Pediatrics

  • The National Society of Genetic Counselors (NSGC) also has an article entitled "Genetic Counseling for Fragile X Syndrome: Updated Recommendations of the National Society of Genetic Counselors”, which is available through their website,www.nsgc.org under Practice Guidelines. Your doctor or genetic counselor may have additional resources for you as well.

  • The Autism Consortium may have additional resources that are helpful for some individuals with fragile X syndrome.

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- Sandra L. Fenwick, President and CEO
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