Support. Connect. Shared Strength.

Help us continue to provide and develop free support and information to individuals, families and professionals impacted by Fragile X Syndrome.

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Our Mission

The Fragile X Society aims to improve the lives of those affected by Fragile X and associated conditions by providing information and continued support to families and professionals they work with. Working together with those affected, the Society supports an inclusive community of people who understand the specific needs of Fragile X.

What is Fragile X?

Diagnosis

How We Help

Become a Friend of Fragile X

Events & Activities

Events

We organise a number of events throughout the year, from our Family Weekend to our Conference. Find out more.

Meet The Team

At the heart of everything we do is a passionate, dedicated team committed to making a difference in the lives of individuals affected by Fragile X. Each member brings unique strengths, expertise, and a shared mission to support families, advance understanding and raise awareness.

More Events

Fundraising at Fragile X

The Fragile X Society rely on fundraising to continue providing vital services and support to those affected by Fragile X Syndrome.

The latest news about our charity, research and practical tips, as well as personal and fundraising stories.

Females with FXS Webinar Series: Tools & Tactics for Anxiety

We’re sharing this webinar from the National Fragile X Foundation and the LivJoy Foundation, exploring how anxiety presents in females with Fragile X Syndrome, how to recognise it, and practical approaches to support across the lifespan.

A Proud Moment for Rhys

We were absolutely delighted to hear this wonderful news from one of our families and are so pleased to be able to share it with our community. Rhys, alongside Owen, trains twice a week with the Manchester United Foundation, showing real commitment and enthusiasm for football. Last year, Rhys was selected to represent the Foundation at the Genuine Cup in Houston, Texas an incredible and truly once in a lifetime opportunity. The Genuine Cup brings together teams from across t

Tim Egerton Takes on 2026 Challenge Series for The Fragile X Society

We are delighted to share that Tim Egerton is taking on an incredible series of endurance challenges throughout 2026 in support of The Fragile X Society. Tim’s commitment and determination are truly inspiring, as he prepares to push himself across multiple events to raise awareness and vital funds for families affected by Fragile X. His challenge calendar includes: Lisbon Half Marathon, 8 March 2026 Newport Marathon, 19 April 2026 The Full Long Course Weekend, 26 to 28 June 2

Help us support more families

Every family living with Fragile X deserves support, information and community. Whether you donate, fundraise, volunteer or share our work, you make that possible.

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Call our helpline:

01371 875100