Fragile X Syndrome: For Researchers and Health Care Providers

• NICHD Intellectual and Developmental Disorders (IDD) Branch
  The majority of Fragile X research supported by the 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 Health Care 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 Clupdated linkearch 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 the NICHD, NIH, or HHS.