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Boston Children's has launched the world's 1st program dedicated to offering hand transplants to children who qualify.
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There are many ways you can help children and their families get the care they need.
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 guidelines are available on the National Fragile X Foundation's website.
The Fragile X Program at Boston Children's Hospital works closely with a number of CSN (Community Support Network) groups in New England. CSN groups are associated and list their contact information with the National Fragile X Foundation.
Fragile X LINKS Group of Eastern Massachusetts (currently not active)
Fragile X Resource Center of Western Massachusetts
Fragile X Association of Rhode Island and Southern MA
Fragile X Society of Connecticut
Norther Vermont Fragile X Community Support Group
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.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”