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!
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.
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'!
Light up a building for Fragile X Awareness Day on 10 October!
Please help us raise awareness for Fragile X Awareness Day on 10 October by asking councils to illuminate buildings in blue!
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
Would you like to appear on TV?
Would you like to appear on TV? If so, this casting call may be of interest!
Supermarket Shopping: please sign our letter!
Supermarket shopping for individuals with learning disabilities and their families/carers: sign our letter!
We need your help for Jeans for Genes Day!
Jeans for Genes Day: can you help? Get involved by making a video clip!
Welcoming Pete Richardson as Managing Director
Pete Richardson joins The Fragile X Society as Managing Director from 5 May 2020
What will your 2.6 Challenge be? Help save UK charities... including the Fragile X Society!
Take on the 2.6 challenge and raise funds to save our charity!
Supporting Children with Fragile X Syndrome during Lockdown: Some Tips
Supporting children with Fragile X Syndrome during lockdown: some tips
Update on benefits: coronavirus
Jane Oliver, Senior Families and Professionals Advisor (Adult Enquiries), highlights some recent changes to benefits
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
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
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.
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.
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...
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...
Welcome, Kate!
Welcome Kate, our new Administrative and Communications Coordinator! We are delighted to welcome Kate Williams to our team as...
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...
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...
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...
Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS): Diagnosis, Treatment and Management.
In this talk from our 2019 Conference, Dr Alusi discusses the diagnosis, treatment and management of FXTAS, as well as her clinic at the...
Update on our Staff Team
We are writing to give an update in relation to some of the recent chances to our staff team. You may have seen that we recently...
Fragile X Conference 2019: Videos and Feedback
Thank you to all of you who joined us for our conference on 7th September at the University of Birmingham Medical School! We are so...
Can you help with our video for Fragile X Awareness Day?
We are creating a new video to show for Fragile X Awareness Day (10th October). We need short clips of brothers and sisters talking...
We want to hear your views!
It is really important to us to be able to take into account the views of our community when planning the future of the Society. So, your...
"It’s goodbye from me". Noel looks back fondly at his time as our Administrative Coordinator
"Back in the harsh winter of early 2018 when the “Mini Beast from the East” was preparing to send blizzards our way, the Fragile X...
Seeking an Honorary Treasurer
Do you have a background in finance, accounting or bookkeeping? We are looking for an amazing volunteer to join our Board of Directors as...
