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. The charity has since grown to consist of a team of dedicated employees and volunteers, supporting thousands of individuals and families.

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Our vision is a world where people living with Fragile X are:

 

  • Valued, included and have their individual needs met – and that Fragile X is recognised and understood by professionals and the public.

  • Not alone – because they have access to an active community of people who understand.

  • Empowered – through evidence-based knowledge about Fragile X.

 

Due to the attitudes of services and society, a lack of awareness, and features caused by the condition, those affected by Fragile X Syndrome face wide-ranging challenges. Families regularly tell us that generic supports and services did not understand their needs adequately, or that they felt lost in broader organisations relating to autism or learning disabilities. We want to change this. 

Our Aims 

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To provide information and practical guidance to support and empower individuals and families living with Fragile X Syndrome and Fragile X Premutation Associated Conditions.

To educate and inform the public and professionals about Fragile X, raising awareness and understanding and improving support for all individuals affected by Fragile X.

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To encourage research into all aspects of Fragile X through working with researchers, encouraging the participation of our family members in Fragile X studies and publicising the results.

Help us to continue our vital work by making a donation

How We Achieve These Aims

We are proud to be able to provide a wide variety of resources for the Fragile X community such as:

  • Providing a national support and information service via our Families and Professionals Advisors

  • Creating a network of families, for instance through our online community and support groups

  • Regular email newsletter, with updates on events, research and activities

  • A range of online resources including ‘easy read’ introductions to the condition and more in-depths papers on specific aspects of Fragile X

  • An eLearning module to educate families and professionals

  • An annual family conference 

  • Media campaigns and an annual awareness day

  • Talks and presentations

  • Encouraging family members to take part in research

  • Publishing the results of Fragile X studies

Our annual report celebrates the work we carry out each year for the Fragile X Community in the UK, and beyond.