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Our News
We regularly post on our news page to keep you updated with the latest developments at the Fragile X Society. Find out about new fundraisers and team updates, as well as details on extra ways to support us by getting involved in awareness days and competitions.
28th February 2025 - Rare Disease Day
Increasing awareness and driving change for the 300 million individuals globally affected by a rare disease, along with their families...
Glasgow Bakers
Steve Harris, the FX Chair, was invited by the Deacon at the Trades House of Glasgow to receive a cheque. The Bakers organized a charity...
FX Ambassador - Olia Hercules
We are delighted to share with you the news that Olia Hercules has agreed to become an Ambassador for the Fragile X Society. Olia is a...
Touch FX
Patrick Wild Centre are looking for volunteers with full mutation fragile X syndrome (aged 3-45) to join their study that aims to better...
Gemma's Fundraiser for Fragile X
We would like to say a massive thank you to Gemma, Andy, their son and all of their friends who took part in the Sutton Coldfield fun run...
Birmingham Conference 2024
We were delighted to see and welcome so many of you to our Fragile X Society Conference held at the Priory Rooms Conference in Birmingham...
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...
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...
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.
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
Farewell from Mark Smith
Director, Mark Smith, says goodbye to the Fragile X Society Board, and shares what inspired him to get involved.
Newborn bloodspot screening
An update from the Chair of our Board of Directors, Kirsten Johnson
Calling all members in Northern Ireland!
Would you like to help shape support for Fragile X families in Northern Ireland?
Our new legacy programme
Fragile X Society has teamed up with Freewills.co.uk to offer a free Will-writing service for our members.
The IGPrare European study
IGPrare European study recently explored experiences of families when sharing their diagnosis with family members: what were the results?
Calling all members in Wales!
Would you like to network with other members and families in Wales at a support group? Let us know if you'd like to join our meetings.
Video Presentations from our Fragile X Society Conference 2022 in Birmingham
Videos of the talks from our Conference 2022 at Birmingham are available to view on our YouTube channel. Click below to watch.
Friendship Friday and Anti-Bullying Week 2022
Anti-Bullying Week is coordinated in England & Wales by the Anti-Bullying Alliance. It takes place 14 -18 Nov 2022 & its theme is Reach Out.
Christmas Cards now in stock!
Our Christmas Cards have arrived! Available from our online shop - please order early!
We need your videos for International Fragile X Awareness Day!
For International Fragile X Day on 10 Oct, FraXI is creating a new video. Please send in a video clip about what Fragile X means for you.
Down Syndrome Act 2022
The Down Syndrome Act: a step forward maybe...But what about Fragile X? The recent Down Syndrome Act has led to an outpouring of strong...
Jess runs the London Marathon
Jessica Bolton has secured a place in this year's London Marathon, and has chosen to raise funds for the Fragile X Society.
Hello from Northern Ireland!
Jan Wright, our contract worker in Northern Ireland, has shared this update on what's been happening in Northern Ireland Hello from...
Light up a landmark for Fragile X Awareness Day on 10 October!
Please help us raise awareness for International Fragile X Awareness Day on 10 October by asking councils to light up a landmark in blue!
Highlights from our Family Weekend at Thomley
A few highlights from our Family Weekend at the fantastic Thomley in Worminghall. Thanks to everyone who joined us!
Mencap's Big Learning Disability Survey
Mencap would like to invite people with a learning disability to take part in their 2022 Big Learning Disability Survey! Have your say:
New pathways of support for Fragile X Syndrome
Launch of Fragile X International (FraXI), a new organisation for families and healthcare professionals who live or work with Fragile X
Ukraine
Our Fragile X Society here in the UK is part of a growing network of countries dedicated to supporting the Fragile X Community and I...
Managing transitions and planning for the future webinar: Thursday 17 February at 7:30pm
Join us on online on Thurs 17 Feb 7.30pm for ‘Managing transitions and planning for the future', with Christine Towers of Together Matters
We are moving!
We're moving offices! Both our office and helpline will be CLOSED Tues 7 - Thurs 9 December. We re-open on Tues 14 December.
Casting call for new BBC drama!
Are you interested in acting? Would you like to take part in a BBC drama? Then I’m delighted to share the following news with you....
Christmas Cards for sale!
Why not support The Fragile X Society this Christmas by sending our Christmas Cards? A choice of 3 new designs at £4 per pack of 10.
International Fragile X Awareness Day - 10 October 2021
X.X. (October 10th) is #InternationalFragileXAwarenessDay 2021! Find out more:
Fragile X Awareness Day - Fragile X Fabulous Funday Sunday Quiz
It's Fragile X Awareness Day on 10 October, so join us online for our first ever virtual 'Fragile X Fabulous Family Funday Sunday Quiz'!
Are you interested in joining the Board of Directors?
Are you enthusiastic, keen to help and have time to give? We'd love to hear from you!
Five Easy Ways to Support The Fragile X Society
Some simple suggestions as to how you can support The Fragile X Society
Virgin Money London Marathon 2021
Virgin Money London Marathon 2021 place for The Fragile X Society
Ready, Steady, GROW!
This spring, we're hoping to spread some sunshine by holding a 'grow your own sunflower' competition!
Online Workshop from Birketts Solicitors: Tuesday 9 March 2021 at 7.30pm
'What legal means are available to protect your loved ones?' I am delighted to announce that on Tuesday 9 March 2021 at 7:30pm we will be...
Covid 19 vaccine prioritised for people with learning disabilities
All people on the Learning Disability Register to be prioritised for Covid-19 vaccine
Costello Medical
Digitally Developing and Diversifying the Fragile X Society: Costello Medical to develop our digital services
Online Workshop for Parents, from Sibs: Tuesday 26 January 2021 at 7.30pm
'Introduction to supporting siblings of children with Fragile X Syndrome' I am delighted to announce that on: Tuesday 26th January 2021...
Our services during Covid-19
How we can support you at this time: our helpline, website and online community are available
Digitally Developing and Diversifying the Fragile X Society Project 2021
An exciting opportunity to work with The Fragile X Society (part-time, temporary six month contract)
Fragile X Friday: please can you help us this Black Friday?
Thanks to your support as members of the Fragile X Society and some welcome grant successes this year we are delighted to have been able...
Our Fragile X Society Christmas Cards have arrived!
Our Fragile X Society Christmas Cards are now available to order from our online shop!
Fragile X Awareness Day 10 October 2020: Virtual Q&A Session
Fragile X Awareness Day 10 October 2020: Virtual Q&A session - video coming soon!
Photographs: can you help?
Please can you help us by sending in photographs we may use?
Goodbye(-ish)! A note from Becky our out-going CEO.
Goodbye(ish)! A note from Becky, our outgoing CEO
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