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Throughout the year we organise a variety of events such as our family conferences, awareness day activities, webinars and more! Keep checking back as details of our upcoming events are continually added. 


Upcoming Events


Annual General Meeting 2024

Virtual Event ● Monday 16th September 2024

Further details to follow soon.


Fragile X Conference 

Midlands Arts Centre, Birmingham ● Saturday 24h September 2022


Presentations and Q&A sessions 


Family Weekend and AGM

Thomley ● Saturday 18th and Sunday 19th June 2022


Family Weekend at Thomley; and our AGM.


Thinking Ahead: Planning for the Future

Virtual Event ● Thursday 17th February 2022


With Christine Towers of Together Matters


Fragile X Conference and AGM

Virtual Event ● Saturday 25th September 2021


Presentations and Q&A sessions by Dr Sundus Alusi (FXTAS), Dr Hayley Crawford and Dr Andy Stanfield (research update) and the Challenging Behaviour Foundation; and our AGM.


FXTAS Workshop: Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS)

Virtual Event ● Thursday 10th June 2021


Presentation and Q&A session by Dr Sundus Alusi.


Easter Virtual Coffee Morning

Virtual Event ● Saturday 3rd April 2021


A chance to get together over a coffee and connect with friends old and new.


Introduction to Supporting Siblings of Children with Fragile X Syndrome

Virtual Event ● Tuesday 26th January 2021


Sibs (the renowned sibling support charity) discussed some ways to support and advise families with brothers and sisters of children affected by Fragile X syndrome, and ensure siblings’ individual needs are met. There are further resources from this session in our ‘Siblings’ blog-post series:

Spotlight on young siblings

A sibling's viewpoint: Anne and Nick's story

Supporting siblings of children with Fragile X


What Means are Available to Protect your Loved Ones?

Virtual Event ● Tuesday 9th March 2021


Hosted by Richard Guy, Senior Associate at Birketts Legal, this online event discussed how you can help your loved ones with making decisions and how best to prepare your own affairs. Q&A sessions allowed attendees to ask Richard further questions.


Christmas Celebration 2020

Virtual Event ● Saturday 12th December 2020


An informal coffee morning to celebrate Christmas together.


Fragile X Awareness Day Q&A Event

Virtual Event ● Saturday 10th October 2020


This Q&A event with Dr Andrew Stanfield and Dr Hayley Crawford discussed updates on the latest Fragile X research and answered members’ questions.


Annual General Meeting 2020

Virtual Event ● Tuesday 22nd September 2020

Returning Safely to School

Virtual Event ● Tuesday 25th September 2020

Caroline Pringle, Families and Professionals Advisor (Child Enquiries), presented some top tips and best practice to guide a child returning safely to school. Further guidance can be found in the video and blog post ‘Going Back to School and How to Support Your Child’.


Fragile X Conference, plus AGM

University of Birmingham Medical School ● Saturday 7th September 2019

A day of talks from leading experts in Fragile X discussing topics which included adulthood, Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS), gene editing, as well as updates on the latest Fragile X research.

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Fragile X Family Day 2019

Thomley Centre, Buckinghamshire ● Saturday 11th May 2019

A day of workshops, talks and fun at this wonderful venue.

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Fragile X Family Conference 2018

Thomley Centre, Buckinghamshire ● 29/30th September 2018

A new-style family weekend conference! Lots of exciting speakers and workshops, all in an inclusive environment at the Thomley Centre. 

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Fragile X Family Conference 2017

Thomley Centre, Buckinghamshire ● 23/24th September 2017

A new-style family weekend conference! Lots of exciting speakers and workshops, all in an inclusive environment at the Thomley Centre. 


Fragile X Research Workshop 2017

14th March 2017

In this exciting collaboration with the University of Oxford, we brought together families along with UK academics interested in Fragile X Syndrome research, to investigate ways of working more closely in partnership to address key issues facing those impacted by Fragile X. 


Birmingham Conference 2016

24th September 2016

We focused on the key topic of Fragile X Premutation carriers, including FXTAS, associated features and family planning. We covered these topics through a mixture of expert speakers, the latest research and family stories. Our conferences are always a great opportunity to meet with others living with or interested in Fragile X.


Stirling Conference 2016

May 2016

Throughout the day we focussed on some of the key practical issues facing children and adults with Fragile X, including education and employment. The day involved a mix of family stories, informative and practical information about Fragile X and speakers that discussed best practice to accessing services.

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