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

• 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.