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We're all at home - help!
Some tips for staying at home from Jane Oliver, Senior Families and Professionals Advisor at The Fragile X Society
Apr 1, 2020
Open letter from Minister Vicky Ford to the SEND Sector
Parliamentary Under-Secretary of State for Children and Families, Vicky Ford MP, has issued an open letter for children and young people wit
Mar 25, 2020
Ava and Ella's hair donation
Tracy shares her story of daughters Ava and Ella's hair donation for the Little Princess Trust - and fundraising for The Fragile X Society
Mar 24, 2020
Cancelled: Family Weekend at Thomley, May 2020
Our planned Family Weekend at Thomley, May 2020, has been cancelled due to current situation with Coronavirus. Further details to follow.
Mar 12, 2020
Fragile X Premutation Associated Conditions (FXPAC) Statement
A European Fragile X Network meeting discussed the term FXAND and recent research on conditions affecting Fragile X premutation carriers.
Jan 30, 2020
Growing up with Fragile X: one family's story
Heather shares her experiences of growing up with brother James, who has Fragile X
Jan 28, 2020
Bridie's Fabulous Fashion Show!
In November 2019, Bridie organised a Fashion Show to raise funds, and awareness, for The Fragile X Society.
Jan 28, 2020
Using Social Stories from Adolescence into Adulthood (Part 2)
This article follows on from our first ‘snippets of advice’ information using social stories for early years to adolescence (click here...
Jan 23, 2020
Families in Birmingham: We need you to help with our film!
The up-coming Rare Film Festival, will shine the light on the experiences of people with rare conditions (affecting fewer than 1 in 2000...
Nov 28, 2019
The Fragile X Community's Views on Screening
Recently, Dr Felicity Boardman and colleagues from Warwick Medical School conducted a study to investigate the implications of genetic...
Nov 28, 2019
Fragile X Podcasts
Podcasts are a fantastic way to get informed on the go. We are delighted to be able to signpost you to some fantastic Fragile X-related...
Nov 27, 2019
We Need You! Opportunity for a Volunteer Grants Officer
We are looking for an individual who can use their experience in grant writing to further the work of our passionate, small, national...
Nov 26, 2019
Welcome, Kate!
Welcome Kate, our new Administrative and Communications Coordinator! We are delighted to welcome Kate Williams to our team as...
Nov 26, 2019
Are you interested in participating in a research project? If so, we'd love to hear from you!
We have been supporting Dr Nermin Khalil in recruiting for her study, “Cognitive Emotional Dysregulation of FMR1 Premutation Carrier...
Nov 26, 2019
Fragile Not Broken: A Documentary
Phoebe created this wonderful documentary about her family's Fragile X diagnosis story. Thank you so much Phoebe for sharing this...
Oct 10, 2019
"I wanted to create a safe space for people who have Fragile x to feel like they're not alone."
Amanda shares why she started her podcast and blog about her experiences of Fragile X, and much more. "I started my podcast for a few...
Oct 10, 2019
Our Fragile X Awareness Day Video is launching at 7am on 10th October!
Rather than sharing simple facts this Fragile X Awareness Day, we wanted to share a snapshot of real, family life with Fragile X...
Oct 9, 2019
Lisa's Xtraordinary Charity Race Night Raises over £800!
On Saturday 28th September 2019 I held a race night with a difference to raise money for Fragile X. Instead watching a horse race on a...
Oct 8, 2019
It's Almost Fragile X Awareness Day!
Thank you to everyone who has requested packs to support your activities for Fragile X Awareness Day activities this Thursday, 10th...
Oct 8, 2019
Three ‘Pillars’ to deliver better support and care for disabled children and their families
"To make a real difference to the lives of disabled children, the Government must make them a priority, including by appointing a...
Oct 8, 2019
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