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Fragile X Diagnosis

It can be an emotional time, and for some, a lonely time when families first learn of a Fragile X diagnosis. We want you to know that you are not alone, and hope that we can help you deal with this. You may have been prepared for a diagnosis or this may have come as a shock but in any case, we are here to provide information, support and a listening ear.


How Having A Diagnosis Can Help

Receiving a Fragile X diagnosis means that you can begin to understand how Fragile X impacts on your and your loved one’s, lives. There will be strategies that can best help with any challenges. 


Following a diagnosis, it may be possible to secure financial benefits, get educational support, and access to specialist health services and social services. Implications of the diagnosis on the wider family can also be considered and discussed.


And let’s not forget the many strengths of those with Fragile X. Parents of children with Fragile X often describe their great sense of humour, their amazing memory and their sensitivity to the feelings of others. 

How We Can Help


The Fragile X Society aims to provide extensive support to families affected by Fragile X Syndrome and can offer a range of information and resources to help those affected to understand the condition. In addition, our Families and Professionals Advisors can provide you with tailored support and information.


You can also become a member of the Fragile X Society (free) to receive our newsletter and information about our forthcoming Family Conferences.


We are the UK registered Fragile X charity and you can find out more about our work here.

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