Fragile X Syndrome Resources

General Information

• National Fragile X Foundation: Fragile X-associated Disorders: A Handbook for Families, Healthcare 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 NICHD, NIH, or HHS.

• NICHD Intellectual and Developmental Disorders Branch (IDDB)
  The majority of Fragile X research supported by NICHD is funded through the IDDB.
  • The IDD Branch’s three Fragile X Syndrome Research Centers are geared toward stimulating multidisciplinary, multi-institutional research and translating basic research findings into clinical practice.
• NIH Fragile X Research Coordinating Group
  This NICHD-led group includes nine Institutes with research interests in different aspects of Fragile X or its associated disorders.
  • Read the NIH Research Plan on Fragile X Syndrome and Associated Disorders.
• Read the coordinating group’s Request for Information to get feedback on the NIH Research Plan.
• American Academy of Pediatrics (AAP)
  The AAP is the professional society for pediatricians and issues clinical guidelines and policies for the care of children with Fragile X and similar disorders.
  • Read the AAP’s Clinical Genetic Evaluation of the Child with Mental Retardation or Developmental Delays .
  • Read the AAP’s Oral Healthcare for Children With Developmental Disabilities .
• FRAXA Research Foundation
  FRAXA’s mission is to accelerate progress toward effective treatments for Fragile X syndrome, and ultimately a cure, by directly funding promising research. FRAXA also supports families affected by Fragile X and raises awareness. Learn more about FRAXA-supported research .
• 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 Fragile X Clinical & Research Consortium , organized by the National Fragile X Foundation, comprises 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.
• National Society of Genetic Counselors (NSGC)
  NSGC is a membership organization and information resource for the profession.
  • Read the NSGC’s Genetic Counseling for Fragile X Syndrome: Updated Recommendations of the National Society of Genetic Counselors .
  • Find a genetic counselor

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