Fragile X Syndrome

Disability/Illness Description:

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.
2100 M St., NW
Ste.170 Box 302
Washington, DC 20037-1233
Phone: 800-688-8765
Fax: 202-747-6208
Email: natlfx@fragilex.org
Eastern Mass
Western Mass
Southern Mass & Rhode Island

Boston Children’s Hospital – Fragile X Program
300 Longwood Ave, Genetics Department
Fegan 4
Boston, MA 02115
Phone: 617-355-4697
Fax: 617-730-0466
Email: sharyn.lincoln@childrens.harvard.edu

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: info@fraxa.org

Other Information:

DNA Learning Center: Your Genes Your Health / Fragile X site

Fragile X Syndrome – US National Library of Medicine

Fragile X Syndrome – Centers for Disease Control and Prevention

Fragile X Syndrome – March of Dimes

Fact Sheet last updated on: 1/18/2017