An update from Dr Natali Bozhilova on international survey on pain experience in people with Prader-Willi, Williams and Fragile X syndromes

In week 5 of her blog series on sensory issues, Caroline (Families & Professionals Advisor, child enquiries) brings it all together.

In week 4 of her series on sensory issues, Caroline (Families & Professionals Advisor, child enquiries) covers balance and body awareness.

In week 3 of her blog series on sensory issues, Caroline (Families and Professionals Advisor for child enquiries) covers taste and smell.

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

An udpdate on a study into the importance of psychological support for parents/caregivers of children with a rare condition at diagnosis

An update from Dr Natali Bozhilova on a recent study

In week 2 of her blog series on sensory issues, Caroline covers hearing/sound and touch, with strategies to help.

The first instalment in our new blog series looks at visual (sight) issues and strategies to help.

Kunal wanted to share with you all some of the fun activities he enjoys with his friends at Pholk Care My name is Kunal Panchal and I...

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

Efficacy and safety of cannabidiol-based hand gel (ZYN002) for young people with Fragile X Syndrome following a recent study.

Louise Clarke shares the exciting news that daughter Emily has been selected to represent Great Britain in tennis at the Special Olympics

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?

In this first instalment of our new series, Sally and Jim Irvine share this family update about sons Jamie (40) and Stephen (35)

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?

Jo has shared this story of how her son, Dennis (known as Coach Deno) has coped with the death of Her Late Majesty Queen Elizabeth II