Help & Support
The Fragile X Society provides information, help and support to individuals and families affected by Fragile X Syndrome, as well as the professionals working with them.
Through our membership, regular newsletters and Family and Professionals Advisors, our team is here and happy to help you. Please do get in touch.
Support for Individuals and Families
Our Families and Professionals Advisors can be contacted by families with a confirmed diagnosis or by those concerned that Fragile X may be the cause of a family member’s difficulties.
Our advisers can provide information tailored to your individual needs as well as share their knowledge on the many aspects of Fragile X Syndrome including behaviour, communication, education and carrier issues. We know that many of our community welcome the opportunity to speak directly to someone with an understanding of the syndrome, alongside the difficulties and triumphs that can present for carers.
Whatever your need, please do call us on 01371 875100 or send an email to info@fragilex.org.uk and we will do our best to help or point you in the direction of someone better placed to give that help.
Support for Professionals
Our Families and Professionals Advisors can also be contacted by professionals working with individuals affected by Fragile X including school and college staff, care and support workers, health care professionals, social workers and care managers. You can contact them by email or telephone.
Join Our Online Community
A great way to 'meet' other individuals and families living with Fragile X is to join our private Facebook group (called: The Fragile X Society). The group is aimed at people with Fragile X Syndrome or carrier conditions (FXTAS or FXPOI) and their families. You can request access to the group by answering some brief questions about your interest in Fragile X, which will be reviewed by the group admins. It is a place to connect with others, share experiences and seek advice. Although it is the Facebook page of the UK charity, we welcome members from all over the world.
The group is an active community of people sharing experience and seeking advice. The group is monitored by our Families and Professionals Advisors as well as other members of the team to ensure the group is a safe place to share. They also provide support and input where required.
Follow us across our social media pages to keep up to date with the latest news about Fragile X and our charity.
Essex group
This group meets one Friday per month in term time from 10.30-12.30 in Chelmsford at a venue near to both the train and bus station. There are no facilities for children.
Local Support Groups
Our family members and professional advisors run support groups in some areas of the UK. These groups are open to all family members, who are or have been carers of individuals with Fragile X Syndrome. Below, you can find details of support groups in your area.
Support Groups in the UK and Scotland
Groups are based in the areas below. They are open to anyone who can travel to them and are not, as their names might suggest, geographically bound.
Please note that support groups are not currently meeting during the COVID-19 pandemic.
Glasgow group
This group covers Glasgow and surrounding areas, so if you are willing to travel a little you can join us. There are no facilities for children.
Join Us or Create Your Own Group
If you would like to join any of these groups, are interested in starting a new group in your area or want to know what is involved, please contact Jane on 01371 875100, by email at jane@fragilex.org.uk or alternatively you can fill out the website contact form.