Fragile X Awareness Day 2026: Raising Awareness Across the UK
Fragile X Awareness Day takes place on Saturday 10th October and, as always, it is an important opportunity to raise awareness, improve understanding and highlight the experiences of individuals and families affected by Fragile X.
This year, the Fragile X Society is using Awareness Day to shine a light on some of the exciting work taking place across healthcare, universities, research and the wider Fragile X community.
A new Fragile X holistic care hub in Leicester
One of the biggest developments this year has been the launch of the new Fragile X holistic care hub at Leicester Royal Infirmary.
The hub has been developed with Professor Julian Barwell and, importantly, through the determination of Fragile X parents Alex and Chris McQuade, who have worked tirelessly to help bring the service to life.
It is an exciting step forward and aims to bring together different areas of care and expertise for people affected by Fragile X and their families.
We are working closely with the Leicester team to raise awareness of the new service and are hopeful that the story, particularly the remarkable role played by one family in helping to create a new service within the NHS, will help attract wider regional and national attention.
Olia Hercules cookery event to be rearranged
Many of you will also have seen that chef, author and Fragile X Society Ambassador Olia Hercules had been planning a special online fundraising cookery event to coincide with Awareness Day.
Unfortunately, Olia has had to postpone the event for work and personal reasons.
We know how disappointed she was, as are we, but she remains completely committed to supporting the Society and is very keen to rearrange the event for the New Year.
We are currently looking at January or early February. This will also give us more time to build interest and make the event as successful as possible.
We are also exploring other ways of working with Olia on regular Fragile X awareness content in the months ahead.
Developing the next generation of Fragile X experts
Another important part of our Awareness Day activity is our Developing Experts in Fragile X programme.
The programme aims to increase knowledge of Fragile X among university students, particularly those studying medicine, health, psychology and related subjects, and to encourage the next generation of professionals and researchers to take an interest in Fragile X.
Around Awareness Day, we are sharing articles, information and letters with universities across England, Scotland, Wales and Northern Ireland.
Our aim is simple: to make sure more students and academics hear about Fragile X, understand why it matters and are encouraged to learn more, carry out research and become advocates for the Fragile X community.
We are already seeing encouraging progress through our links with universities including Cambridge, Warwick, Keele, Queen’s University Belfast and Edinburgh, and we hope to build on this significantly over the coming year.
Awareness that continues throughout the year
Alongside this work, we will continue sharing information and family stories through our website and social media and encouraging others to help us spread the word.
Fragile X Awareness Day is always important, but our ambition is for awareness raising to continue throughout the year.
Whether that is through better clinical services, new university partnerships, research, media coverage or simply helping more people understand Fragile X, every step helps.
Thank you to everyone in the Fragile X community for the many ways you continue to support the Society and help raise awareness.