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 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.

Membership of the Society is FREE to:

  • fragile X families
  • carriers of fragile X
  • people who are affected by fragile X
  • and full time carers of children or adults with fragile X 

Professionals and others interested in fragile X

  • Join as Associate Members
  • Annual Subscription: £15

Families and professionals living outside the UK

  • Join as Overseas Members
  • Annual Subscription: £30

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.

Membership of the Society is FREE to:

  • fragile X families
  • carriers of fragile X
  • people who are affected by fragile X
  • and full time carers of children or adults with fragile X 

Professionals and others interested in fragile X

  • Join as Associate Members
  • Annual Subscription: £15

Families and professionals living outside the UK

  • Join as Overseas Members
  • Annual Subscription: £30

Tim Potter - Managing Director

and our Family Support Workers

Jane Oliver and Wendy Bowler

Tim Potter - Managing Director

and our Family Support Workers

Jane Oliver and Wendy Bowler

Charity registration number 1127861 - The Fragile X Society Registered Charity and Limited Company Registered in England
Company registration number 6724061 - Registered office: Rood End House, 6 Stortford Road, Great Dunmow, Essex CM6 1DA
DISCLAIMER:
Great care has been taken in the compilation and preparation of this site to ensure that the information included is accurate. However The Fragile X Society cannot accept responsibility for any errors or omissions. The information is provided for education and information purposes and you should obtain further information from your medical practitioner. We do not knowingly reproduce inaccurate or libellous material. Any links to external websites have been carefully selected but are provided without any endorsement of the content of those sites.

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