Fragile X International

Accueil
België
Bruxelles / Brussel
Fragile X International

Fragile X International is a network of Fragile X family organizations from around the world. See our website for our Vision and Mission, and more information!

Fragile X International (FraXI) was founded in 2022 by a network of 17 country family organisations from the European Fragile X Network. We very much welcome new members to join as either full or associate members. Full membership is open to all fragile x family organisations around the world. Associate membership is available to corporations, non-family organisations and other charities. Here's our press release on the founding of FraXI:https://www.fraxi.org/pressrelease2.pdf

History:

In May 2011, representatives from eight European Fragile X family associations plus one from Israel came together to meet in Amsterdam. It was a fantastic feeling to be together and discuss the many common issues related to Fragile X, our families and associations. We decided to stay together, start to work together on projects and bring the European idea to life. We now have a common Fragile X awareness day, it's the 10th of October, or in roman letters: X.X.! Our independent network of Fragile X associations will see first larger common projects and some other, smaller cooperations. We will work together, combining our strengths and powers in order to improve the lives of families affected by Fragile X all over Europe. We are thankful to EURORDIS, the European organisation for rare diseases, for their support, that enabled us to come together in Amsterdam, Brussels, Paris and London! Our fifth meeting took place in Rome in November 2014. Never have there been more European family associations coming together! Scroll through our feed to see our activities over the years....

01/10/2026

October 10th, or International Fragile X Awareness Day, is 9 days away! FraXI is beginning October by announcing our theme for this year: "Lifelong Learning"

Why is learning so important to us as the FX Community? Well, the truth is, nobody every stops learning, no matter what condition they live with. With Fragile X, learning about it is highly dependent on taking the time and having the energy and patience to listen to and observe a loved one who lives with the condition. One thing we can all agree on about FX is that it presents itself differently in every individual, which is why one-size-fits-all, non-person centred approaches are unhelpful after diagnosis. A lot of care and compassion needs to be taken to learn about a person's life with FX. At the end of the day, we all want our loved one living with FX to lead their lives as happily and independently as possible, and empower them to take decisions on their own.

So what do we have in store for you next month?

Launching Fragile XChange Phase One: With great thanks to Boston Scientific Foundation Europe, FraXI was able to compile a library of informative, specialist-curated videos on a range of topics such as diagnosis and next steps, medical treatment, behavioural therapies, and relationships. We aim to release the video library on our YouTube Channel in the lead-up to X.X.26.
Click here to subscribe and never miss any updates:
https://www.youtube.com/Fragile X International

Awareness Animation: We worked on a short animated video as an introductory clip to FraXI! We took extra care to make sure that everyone feels represented by the video, regardless of where they come form, how old they are, or what language they speak.

Fundraising Run: Some of our incredible volunteers are taking on the Oxford Half Marathon on the 11th of October to raise funds (and awareness) for FraXI! We will share more information soon.
Be part of the celebrations! Remember that awareness is all about telling your story and learning from others. Do you have a story that you feel will inspire others in their lifelong journey of learning? Share it with us at [email protected].

28/09/2026

Dr David Hessl and his team have developed a toolbox which will support the cognitive function of very young children or those functioning with a mental age of 2-4 years. David, who is based at the Translational Psychophysiology and Assessment Laboratory (T-PAL) at the MIND Institute and the Department of Psychiatry and Behavioral Sciences at the University of California Davis in Sacramento spoke to us at FraXI about his project.

To read the full interview, please visit https://fraxi.org/a-new-and-inclusive-toolbox-supporting-the-cognitive-function-of-very-young-children-and-those-with-intellectual-and-developmental-disabilities/

To help FraXI achieve its vision, please donate here https://fraxi.org/donate/. Your support really matters to us.
You can learn more about our work at www.fraxi.org.

25/09/2026

Let's spread knowledge and awareness on this day dedicated to Ataxia. How is it connected with Fragile X? Watch the video to find it out!

To help FraXI achieve its vision, please donate here https://fraxi.org/donate/. Your support really matters to us.
You can learn more about our work at www.fraxi.org.

21/09/2026

Newborn screening is a quick, routine health check performed for most babies a few days after birth. It involves pricking the baby’s heel to collect a few drops of blood on a card to check for rare but serious conditions to enable treatment early. Over the past 20 years, different parent support organizations have actively advocated for the integration of Fragile X Syndrome testing into the neonatal bloodspot screening using this heel-prick test. One major stumbling block has been, until now, availability of a screening tool that aligns with current screening requirements.

A recent study published in Genetics in Medicine found that it is now possible to screen newborn boys and girls using this heel-prick test. The study led by FraXI Board of Advisors member Professor David E. Godler and his team demonstrated that such a tool now exists, showing feasibility of newborn screening for Fragile X Syndrome (FXS).

To read the full article by Godler and others, please visit https://fraxi.org/it-is-now-possible-to-screen-newborns-for-fragile-x-syndrome-new-study-finds/

To help FraXI achieve its vision, please donate here https://fraxi.org/donate/. Your support really matters to us.
You can learn more about our work at www.fraxi.org.

17/09/2026

Fragile X Care Home in China

2026 has been a year of broadening connections and reaching out for FraXI. This summer, we were lucky enough to be introduced to the Fragile X Care Home in China, a community-run space for families and individuals living with Fragile X Syndrome. We had a conversation with Li Wei, who leads the care home.

Find out what they do for families, the types of activities families are involved in, and how they seek to support those facing stigma and discrimination.
Visit https://fraxi.org/introducing-our-friends-at-the-fragile-x-care-home-in-china/

To help FraXI achieve its vision, please donate here https://fraxi.org/donate/. Your support really matters to us.
You can learn more about our work at www.fraxi.org.

14/09/2026

Shape Research Change Lives Survey Report

FraXI is delighted to have been given the opportunity to collaborate with a team of researchers at the University of Surrey on analysing data collected from a survey on our community’s opinions on what research priorities should be adopted in future research on FXS and why. We endorsed the Shape Research Change Lives study to further our understanding of the perceived importance of priorities for future research according to the FXS community, namely parents/carers and children and adults with FXS, and to provide an opportunity for the community to identify research priorities with their own voice. We thank each and every participant for their contribution to this highly important research.

Read about the report at https://fraxi.org/shape-research-change-lives-survey-report-top-research-priorities-for-fxs-as-told-by-our-community/

To help FraXI achieve its vision, please donate here https://fraxi.org/donate/. Your support really matters to us.
You can learn more about our work at www.fraxi.org.

10/09/2026

“One Year. Five Half Marathons. Five Countries. One Mission. When I first dreamed up Running the X for Fragile X, I thought I was setting myself a running challenge. Looking back now, I realise it became so much more than that. I opened a window into our lives and what it means to live with Fragile X Syndrome. I shared the joys, the challenges, the fears and the victories, all in the hope of creating awareness and helping people better understand Fragile X.
Running the X may be complete … but my heart will always run for Fragile X.”

Bríd Quinn—our amazing mom who fostered connection, radiated joy, and raised awareness through her running—has completed her challenge. Her final run took place in a different location than originally planned due to the passing of her beloved dad, yet it was undoubtedly the most fitting and meaningful place for her. We can only thank her from the bottom of our hearts for being an example of determination, love, passion and dedication!

Read her story and let yourself be inspired by her words here.: https://fraxi.org/beyond-the-finish-line-a-tribute-to-running-the-x-for-fragile-x-and-remembering-why-we-must-keep-going/

To help FraXI achieve its vision, please donate here https://fraxi.org/donate/. Your support really matters to us.
You can learn more about our work at www.fraxi.org.

07/09/2026

Rare Barometer Survey on Mental Health: FXS-specific results

There is much to be done to support the mental health of individuals and families living with FXS, according to key findings from a Rare Barometer survey on the mental health of people with rare conditions. The report, published in June 2026, revealed that 7 out of 10 individuals living with FXS and their families report poor mental health.

Living with a rare condition must never result in our community facing extreme difficulties with living happily and surrounded by support. This Rare Barometer survey is an important call to action that FraXI and organisations supporting rare conditions advocacy cannot ignore.

FraXI’s President Dr Kirsten Johnson, who recently spoke on Mental Health at the European Conference on Rare Diseases shares the following message: “All of us have mental health, as we do physical health, and this can be good or bad, or somewhere on the spectrum depending on the day. However, this survey gives us evidence that those living with FXS and their families experience significantly greater mental health impacts than the general population. Recognising this is the first step, and then providing support and solutions should follow, so that families and individuals living with FXS can have the best possible quality of life."

For more info about the survey visit https://fraxi.org/rare-barometer-survey-on-mental-health-fxs-specific-results/

To help FraXI achieve its vision, please donate here https://fraxi.org/donate/. Your support really matters to us.
You can learn more about our work at www.fraxi.org.

05/09/2026

We are pleased to annouce the 2nd Fragile X International Congress, taking place in Oslo, Norway, on 5–6 November 2026. Following the success of our first Congress in Barcelona, we are bringing together researchers, clinicians, professionals, families and representatives of Fragile X organisations from around the world for two days of scientific exchange, discussion and collaboration.

The Congress programme will cover the latest developments in Fragile X research and care, including:
-Newborn and prenatal screening, as well as advances in long-read sequencing
-Behaviour in FXS, including trajectories across childhood, autism and anxiety, medication, the gut microbiome, and approaches to supporting strengths and challenges in people with FXS
-Recent developments in FXS science, including pre-clinical and translational research, animal models and brain organoids, mosaicism, biomarkers, and brain biobanking
-FMR1 premutation conditions, with sessions covering the different aspects of FXPAC
-Approaches to care across the life course, including practical aspects of Fragile X care, the ethics of care, and different models of specialist care from around the world
-Life with Fragile X syndrome, including self-advocate perspectives, the development of international resources and registries, and updates on the Fragile X Clinical Guidelines.

A key aim of the Congress is to create opportunities for meaningful discussion and collaboration across countries and disciplines. We particularly hope that the meeting will help strengthen international research collaborations and ensure that research and clinical developments remain connected to the priorities and experiences of people and families living with Fragile X conditions.

To help FraXI achieve its vision, please donate here https://fraxi.org/donate/. Your support really matters to us.
You can learn more about our work at www.fraxi.org.

31/08/2026

FraXI endorses upcoming textbook on understanding rare neurodevelopmental conditions by Prof Linda Gilmore, a developmental psychologist and Adjunct Professor at Queensland University of Technology in Brisbane, Australia with more than three decades of experience in the field of developmental disabilities, spanning university teaching, research and clinical practice.

Taking on a compassionate approach to understanding the genetics of rare neurodevelopment conditions with clear, accessible explanations that assume no prior biology knowledge and support learning, Linda’s book offers clarity about the genetic and ethical dimensions of rare neurodevelopmental conditions, including modern genomic testing. She supports evidence‑based practice with practical family centred insights grounded in real cases.

To learn more about the book and Prof. Gilmore, visit https://fraxi.org/fraxi-endorses-upcoming-textbook-on-understanding-rare-neurodevelopmental-conditions-by-prof-linda-gilmore/.
You can find a full interview with Prof Gilmore at https://fraxi.org/science-is-not-meaningful-without-human-stories-in-conversation-with-professor-linda-gilmore/

To help FraXI achieve its vision, please donate here https://fraxi.org/donate/. Your support really matters to us.
You can learn more about our work at www.fraxi.org.

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