A Rare Find is released this Sunday, 5th November 2023
The UK currently screens newborns for just 9 rare but serious conditions whereas the USA tests for up to 59. Local filmmaker John Lee...
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- Oct 26
Anti-Bullying Week Monday 13th – Friday 17th November 2023
The anti-bullying alliance have released a booklet for anti-bullying week. Covering how you can take part and timeline for the week.
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- Oct 19
Danielle & Isla's Fundraiser for Fragile X Society
Danielle and Isla are running the Garioch 5k. This is their story on why they have chosen the Fragile X Society to support. The Society...
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- Oct 11
Anti-Bullying Week: 13 – 17th November 2023
Alison Field, Families and Professionals Advisor (Child Enquiries) shares some information about this year's Anti-Bullying Week: I do...
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- Oct 10
Fragile X Awareness Day
Freya Woods - Interview Please watch this inspiring interview between Pete Richardson and Freya Woods for Fragile X Awareness Day. Thank...
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- Aug 10
Top tips for returning to school… by Alison Field
1. If the school your child goes to has provided a transition book, then try to look at it regularly in the run up to returning...
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- Aug 9
Fragile X Premutation Carrier
“Are you are a Fragile X premutation carrier and if so, would you like to take part in some ground breaking research? This study is being...
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- Jul 27
Freya's Story
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....
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- Jul 27
Kunal's Days Out
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...
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- Jul 26
Fragile X Premutation Study Girls & Woman- Take Part in Research
Thank you to all who have participated in University of Surrey’s research on social and emotional wellbeing in women with the fragile X...
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- Jul 19
BEOND STUDY
Behavioural and Emotional Outcomes in individuals with Neurodevelopmental Disorders (BEOND) Study About the study The Cerebra Network for...
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- Jun 21
Leicester Fragile X Hub
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...
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- Jun 21
The New School Year -Getting Ready for the Autumn Term
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...
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- Jun 21
A Farewell From Me
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...
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- Mar 8
International Survey on Pain Experience
An update from Dr Natali Bozhilova on international survey on pain experience in people with Prader-Willi, Williams and Fragile X syndromes
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- Mar 2
Sensory issues and strategies to help: Week 5 (other factors, and bringing it all together)
In week 5 of her blog series on sensory issues, Caroline (Families & Professionals Advisor, child enquiries) brings it all together.
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- Mar 2
Sensory issues and strategies to help: Week 4 (balance and body awareness)
In week 4 of her series on sensory issues, Caroline (Families & Professionals Advisor, child enquiries) covers balance and body awareness.
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