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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


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


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


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


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


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...
Oct 4, 2019


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...
Sep 24, 2019
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