Fragile X Syndrome: Information from Federal Agencies

Find resources and guidance here from national organizations to help support patients and families with Fragile X Syndrome.

Centers for Disease Control and Prevention

• Fragile X Syndrome – Information, data and statistics, and free materials about FXS and associated disorders
• Family Health Portrait: A Tool From the Surgeon General – Create and maintain a family health history that can be shared with health care professionals.

National Institutes of Health

• GeneReviews on FMR1-Related Disorders
• Fragile X Syndrome – Eunice Kennedy Shriver National Institute of Child Health and Human Development
• Learning About Fragile X Syndrome – National Human Genome Research Institute
• Children and Clinical Studies

Organizations that can serve as resources to patients and families

• National Fragile X Foundation – A source of information about FXS and research opportunities available
• Family to Family Health Information Centers
• Parent to Parent – Provides emotional support and information for families of children with special needs
• Family Voices – Family-led organization providing support to families with children and youth having special health care needs
• Autism Society of America
• Autism Speaks
• Genetic Alliance – Making Sense of Your Genes: A Guide to Genetic Counseling