Newly Diagnosed

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 we hope that we can help you deal with this. We are here to provide information, support and a listening ear. 

How having a diagnosis can help  

• You can begin to understand how Fragile X impacts on yours, or your loved ones', lives and strategies that can best help with any challenges. 

• By contacting the Society, you can find support and information.

• By becoming members of the Society you will receive our Newsletter and information about all our Family Conferences.

• 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 begin to be considered and  discussed.

• And let’s not forget all the great things about your child. 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 can we can help

We are the UK registered charity providing support, and information to families whose children and relatives have Fragile X Syndrome. To find out more about our work, click here. 

What would you like to do?  

• Obtain information about Fragile X

• Seek support and information from our Families and Professionals Advisors,  to seek personalised support and information, and who know well the issues that may concern you

• Apply to become a member so that you can access all the benefits which members are entitled to

• Join our Fragile X community and make contact with other families who are affected by Fragile X

• Find Fragile X events which are taking place, which may give you the opportunity to meet other families affected by Fragile X, or participate in other activities such as fundraising.