Our News

We are delighted that chef, author and Fragile X Society Ambassador Olia Hercules will be hosting a special online dumpling workshop to help raise funds for the Fragile X Society. The workshop will take place on Sunday 11 October at 4.00pm UK time via Zoom. Olia has a very personal connection to Fragile X, with three generations of her family affected by Fragile X and associated conditions. Speaking about the event, Olia says that the Fragile X Society has supported her famil

We are delighted to welcome Bella to the FXS and look forward to working with her to help raise awareness of Fragile X and support our wider community. My Name is Isabella McGrail but I go by Bella! I am currently a student Nurse at Kington University London and alongside my studies I work as a Play and Youth support worker for children and young adults with additional needs. I have a passion for helping others, raising awareness, and helping in the community where I can so h

We are delighted to have Aaminar involved and look forward to working with her to help raise awareness of Fragile X and support our wider community. I am currently a first-year PhD student at the University of Warwick with my research focus “Exploring Quality of Life in Individuals with Fragile X Syndrome”. Quality of life is a broad concept that extends beyond physical health. Exploring quality of life leads to understanding what matters most to an individual and the factor

A huge thank you to Nicola Hart and her sisters in law for completing the Kiltwalk at the weekend in support of the Fragile X Society. Their fantastic effort helped to raise both funds and awareness for Fragile X, and we are very grateful for their support. We would also like to thank everyone who sponsored them and encouraged them along the way. Fundraising like this makes a real difference and helps us continue providing information, advice and support to individuals and fa

Over recent months, we have continued to grow our Developing Experts Programme, building relationships with universities and helping future health and care professionals develop a better understanding of Fragile X. As part of this work, we recently visited both Keele University and the University of Warwick. Although the two visits were quite different, both showed a real enthusiasm for strengthening knowledge of Fragile X and involving students and researchers in our work. A

In the lead up to our recent conference, centred around living with Fragile X, Sabrina Kinsella reached out to families across our community with a simple but powerful idea, to capture meaningful, everyday moments with their loved ones with Fragile X. The response was truly heart warming, with families generously sharing clips that reflected joy, connection and the unique personalities of their children and family members. Sabrina brought these together into a beautiful video

We are delighted to share that Sabrina has recently partnered with the Fragile X Society to help raise awareness of Fragile X syndrome and to champion the voices of families at the heart of our community. Following her son’s diagnosis, Sabrina became determined to make a difference. Like many parents, she experienced first hand how limited awareness and understanding can be at the point of diagnosis. Rather than stepping back, she chose to step forward. What began as a person

We are pleased to announce that Thetford Golf Club has selected the Fragile X Society UK as their chosen charity. This is wonderful news for our community and we are incredibly grateful to the club members for selecting us. Over the coming year, Thetford Golf Club will be organising fundraising activities and events to help raise both awareness and vital funds to support families affected by Fragile X syndrome across the UK. We would also like to say a special thank you to Ma

We are delighted to congratulate Katie Quinn on taking first place in the flash talk competition for doctoral students at the LifeArc conference earlier this month. Katie impressed judges and delegates with a powerful and deeply personal presentation exploring the lived experience of becoming a carer for someone with Fragile X. The annual LifeArc conference brings together doctoral researchers from across the UK, challenging them to present their work in concise and impactf

A New Partnership with Queen’s University Belfast and a Stronger Voice for Families As part of Fragile X Awareness Day on 10 October 2025, we are pleased to share a regional media feature that has been sent to all major newspapers and media outlets across Northern Ireland. This article is part of our continued work to shine a light on the lived experiences of families affected by Fragile X Syndrome and to highlight the importance of continued support, understanding, and resea

On Friday 10th October, landmarks across Sunderland were beautifully lit in blue to raise awareness of Fragile X Syndrome, thanks to the support of Sunderland Council and the incredible efforts of Kay and Janice. Iconic sites including Penshaw Monument shone brightly throughout the evening, creating a powerful visual statement in honour of families affected by Fragile X. This public show of support marks another year that the Robinson family and their local community have wor

As part of the Fragile X Society’s 35th Anniversary, we’re proud to introduce Sabrina Kinsella a passionate parent, and one of our...

How Life with Fragile X in the UK Has Evolved — and What the Next 35 Years Could Bring “As a small charity, our strength has always come...

What is Fight for Ordinary? In mid-July, the Disabled Children’s Partnership will be launching the Fight for Ordinary campaign. Fight For...

We are delighted to let you know about a forthcoming International Workshop on Fragile X Syndrome on June 20th 2025 in Padua, organised...

In March 2025, we hosted our Edinburgh conference for the second consecutive year. The event was highly successful. We extend our...

Thank you all for attending the conference and for playing such an important role in making it a truly meaningful and inspiring event....

Increasing awareness and driving change for the 300 million individuals globally affected by a rare disease, along with their families...

Steve Harris, the FX Chair, was invited by the Deacon at the Trades House of Glasgow to receive a cheque. The Bakers organized a charity...

We are delighted to share with you the news that Olia Hercules has agreed to become an Ambassador for the Fragile X Society. Olia is a...

Patrick Wild Centre are looking for volunteers with full mutation fragile X syndrome (aged 3-45) to join their study that aims to better...

We would like to say a massive thank you to Gemma, Andy, their son and all of their friends who took part in the Sutton Coldfield fun run...

We were delighted to see and welcome so many of you to our Fragile X Society Conference held at the Priory Rooms Conference in Birmingham...

The UK currently screens newborns for just 9 rare but serious conditions whereas the USA tests for up to 59. Local filmmaker John Lee...

Today I’d like to share some really exciting news about plans to develop a Specialist Fragile X Hub in Leicester and how you can be...

NEW: watch our animated video raising awareness of Fragile X and associated conditions, to mark Rare Disease Day 2023.

We are seeking to recruit a part-time Office Administrator to work at our office in Great Dunmow Essex. Find out more including how to apply

Director, Mark Smith, says goodbye to the Fragile X Society Board, and shares what inspired him to get involved.

An update from the Chair of our Board of Directors, Kirsten Johnson

Would you like to help shape support for Fragile X families in Northern Ireland?

Fragile X Society has teamed up with Freewills.co.uk to offer a free Will-writing service for our members.

IGPrare European study recently explored experiences of families when sharing their diagnosis with family members: what were the results?

Would you like to network with other members and families in Wales at a support group? Let us know if you'd like to join our meetings.

Videos of the talks from our Conference 2022 at Birmingham are available to view on our YouTube channel. Click below to watch.

Anti-Bullying Week is coordinated in England & Wales by the Anti-Bullying Alliance. It takes place 14 -18 Nov 2022 & its theme is Reach Out.

Our Christmas Cards have arrived! Available from our online shop - please order early!

For International Fragile X Day on 10 Oct, FraXI is creating a new video. Please send in a video clip about what Fragile X means for you.

The Down Syndrome Act: a step forward maybe...But what about Fragile X? The recent Down Syndrome Act has led to an outpouring of strong...

Jessica Bolton has secured a place in this year's London Marathon, and has chosen to raise funds for the Fragile X Society.

Jan Wright, our contract worker in Northern Ireland, has shared this update on what's been happening in Northern Ireland Hello from...

Please help us raise awareness for International Fragile X Awareness Day on 10 October by asking councils to light up a landmark in blue!

A few highlights from our Family Weekend at the fantastic Thomley in Worminghall. Thanks to everyone who joined us!

Mencap would like to invite people with a learning disability to take part in their 2022 Big Learning Disability Survey! Have your say:

Launch of Fragile X International (FraXI), a new organisation for families and healthcare professionals who live or work with Fragile X

Our Fragile X Society here in the UK is part of a growing network of countries dedicated to supporting the Fragile X Community and I...

Join us on online on Thurs 17 Feb 7.30pm for ‘Managing transitions and planning for the future', with Christine Towers of Together Matters

We're moving offices! Both our office and helpline will be CLOSED Tues 7 - Thurs 9 December. We re-open on Tues 14 December.