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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- 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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- Feb 28
Rare Disease Day: 28 February 2023
NEW: watch our animated video raising awareness of Fragile X and associated conditions, to mark Rare Disease Day 2023.
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- Feb 8
We are hiring!
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
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- Jan 5
Farewell from Mark Smith
Director, Mark Smith, says goodbye to the Fragile X Society Board, and shares what inspired him to get involved.
146 views
- Jan 3
Newborn bloodspot screening
An update from the Chair of our Board of Directors, Kirsten Johnson
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- Nov 30, 2022
Calling all members in Northern Ireland!
Would you like to help shape support for Fragile X families in Northern Ireland?
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- Nov 15, 2022
Our new legacy programme
Fragile X Society has teamed up with Freewills.co.uk to offer a free Will-writing service for our members.
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- Nov 8, 2022
The IGPrare European study
IGPrare European study recently explored experiences of families when sharing their diagnosis with family members: what were the results?
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