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


The Fragile X Society's board members

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 - that they have access to an active community of people who understand.

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


Due to services' and society's attitudes, a lack of awareness, and features caused by the condition, people living with Fragile X and their families 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 disability. We want to change this. 

Our Aims 

To provide information and practical guidance to support and empower individuals and families living with Fragile X Syndrome and Fragile X-associated conditions

To educate and inform the public and professionals about Fragile X in order to raise awareness and understanding of the syndrome and improve support for all individuals affected by Fragile X

To encourage research into all aspects of Fragile X through the participation of our family members in Fragile X studies and to publicise the results.

Help us continue our vital work by donating here. Thank you.

How We Achieve These Aims

We are proud to be able to provide a wide variety of resources for the Fragile X Community

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