Fragile X Syndrome
Fragile X syndrome is a genetic disorder that causes developmental disabilities. These can include learning disabilities; behavioral disabilities; mild to severe intellectual disabilities; attention deficit hyperactivity disorder; sensory and perceptual differences; speech and language disabilities; certain physical characteristics; and/or autism or autistic behaviors. Effects vary among individuals; not everyone with Fragile X has all of these characteristics.
Associations/Groups:
National Fragile X Foundation
Promotes education and research about Fragile X; disseminates information and new findings; provides names of parent contacts, regional resource centers and professionals with expertise in Fragile X.
1861 International Drive, Suite 200
Mclean, VA 22101
Phone: 800-688-8765
Email: [email protected]
Boston Children’s Hospital – Fragile X Program
300 Longwood Avenue Genetics Department
Fegan 4
Boston, MA 02115
Phone: 617-355-4697
Email: [email protected]
FRAXA Research Foundation
National parent organization with the goal of promoting research aimed at treatment. Funds a gene therapy study and a study on what the gene responsible for Fragile X does; publishes a quarterly newsletter for parents, physicians, and educators; and publishes a medication guide and general informational brochures.
10 Prince Place, Suite 203
Newburyport, MA 01950
Phone: 978-462-1866
Email: [email protected]
Other Information:
DNA Learning Center: Your Genes Your Health / Fragile X
Fragile X Syndrome – US National Library of Medicine
Fragile X Syndrome – Centers for Disease Control and Prevention
Fact Sheet last updated on: 2/16/2023
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