Freya has written a lovely story in her own words to help raise awareness about people with learning disabilities. I’m not less than you....

Kunal has kindly shared some of the days out he has been on recently and we have enjoyed reading and seeing what a great time he had. My...

Thank you to all who have participated in University of Surrey’s research on social and emotional wellbeing in women with the fragile X...

Behavioural and Emotional Outcomes in individuals with Neurodevelopmental Disorders (BEOND) Study About the study The Cerebra Network for...

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...

Before we know it, the school summer holidays will be here, and it will be another change of routine for your child. It will then be the...

I wanted to take this opportunity of saying goodbye to you all as I will be retiring at the end of the month, my last day at work being...

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...