Fragile X Syndrome: For Patients and Consumers

General Information

• National Fragile X Foundation: Fragile X-associated Disorders: A Handbook for Families, Health Care Providers, Counselors, and Educators (PDF – 975 KB)
• National Library of Medicine, MedlinePlus: Fragile X Syndrome
• FRAXA Research Foundation: What is Fragile X?

Services, Resources, and Support

• Safe Return to School For All summarizes current evidence and best practices to help administrators, educators, and families and students—including students with disabilities—return to school safely in the context of COVID-19. The information provided is based on collaborative research from the NICHD-funded Washington University Intellectual and Developmental Disabilities Research Center, the University of Missouri-Kansas City Institute of Human Development, and the Kennedy Krieger Institute (Maryland), in collaboration with the Special School District of St. Louis County, Missouri.
• FRAXA Research Foundation
  This foundation, which is run by Fragile X families, aims to accelerate progress toward effective treatments and a cure for Fragile X by directly funding research. It supports families affected by Fragile X and raises awareness of the condition. Toward a cure … What's new?
• National Fragile X Foundation
  This foundation aims to provide information and advance research toward improved treatments and a cure for Fragile X and its associated disorders. The site also has information about genetic counseling and finding a genetic counselor.
  • Contact the foundation for more information about Fragile X-associated disorders
  • Find a Fragile X clinic for treatment or evaluation
  • Join a support network
  • Read "What is genetic counseling?"
• Fragile X Clinical and Research Consortium
  The Consortium, organized by the National Fragile X Foundation, is comprised of clinical researchers and intervention professionals at clinics located in medical institutions throughout the U.S. and Canada. Those professionals are committed to providing state-of-the-art and comprehensive evaluation and treatment recommendations for families, and to building an infrastructure for the advancement of scientific research leading to a better understanding of Fragile X syndrome and associated disorders.
• Our Fragile X World
  This website is maintained by a community of Fragile X families and researchers; it provides information about Fragile X syndrome. Information is also collected for periodic surveys.

Please note: Links to organizations and information included on this page do not indicate endorsement from the NICHD, NIH, or HHS.