About the Fragile X Society

The Fragile X Society was formed in 1990 by families whose children had just been diagnosed with Fragile X Syndrome. At that time there were no facilities to support and inform families about any aspect of fragile X, and so the Society came into existence.

Discovering that your child has fragile X can be a devastating experience. We want families to have the opportunity of support from others who know the problems, and to have access to full information about the syndrome, including the latest medical, psychological and educational research findings.

With a fuller understanding of the condition, parents can be far more constructive and effective in helping their children to reach their full potential.

The Society’s Aims are to:

  • provide support and information to fragile X families from those who share and understand their concerns and needs
  • educate and inform the public and professionals about fragile X in order to raise awareness and understanding of the syndrome and so improve the care of all people affected by fragile X
  • encourage research into all aspects of fragile X and publicise the results

How do we achieve these aims?

through the Society’s

  • National Support and Information Service
  • Family Members who offer a listening ear with the benefit of shared experience and who can also offer information on education statementing, epilepsy and benefits; and information for Asian families in Gujarati, Hindi and Urdu
  • Newsletter published six times a year, with articles by families, professionals and researchers
  • Introductory fragile X leaflet and booklets, including a booklet about carriers, and information about fragile X in ‘Easy Read’ format
  • Over 70 papers giving detailed information on specific aspects of fragile X
  • DVD: “The Fragile X Syndrome”
  • Book: “Educating Children with Fragile X Syndrome”
  • Annual family conferences in England, Scotland and Northern Ireland
  • Media campaigns and wide distribution of literature
  • Talks and presentations
  • Encouraging and arranging for our family members to take part in research
  • Publishing the results of fragile X studies.


Write to us at

The Fragile X Society

Rood End House, 6 Stortford Road, Great Dunmow, Essex CM6 1DA

Phone us on
Tel: 00 44 (0)1371 875100

Contact us by email