The UK currently screens newborns for just 9 rare but serious conditions whereas the USA tests for up to 59. Local filmmaker John Lee...

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...

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

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

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?

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?