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...