Fragile X International

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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 o

ur 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....

22/07/2026

Today, we join remarkable organisations across the United States, Australia, New Zealand, India and Canada to mark their National Fragile X Awareness Day, honoring their shared dedication to improving the lives of people living with Fragile X Syndrome.
Together, we work to spread awareness, exchange knowledge, and help individuals with Fragile X pursue their goals – because every single day counts.
To all those who raise their voices, take meaningful action, and help build a more inclusive society: we thank you!
Let's remain united, grow stronger as a community, and continue spreading awareness – not only today, but every day – as we look forward to International Fragile X Awareness Day on October 10.
Together, let's keep Fragile X in the spotlight. Always.

Fragile X Association of Australia Fragile X India Fragile X New Zealand The National Fragile X Foundation Fragile X Canada

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.

17/07/2026

Anxiety and intolerance of uncertainty in Fragile X Syndrome

In a study supported by the Baily Thomas Charitable Fund, Cerebra and the Cornelia de Lange Syndrome Foundation UK and Ireland, a group of researchers has contrasted the relationship between anxiety and Intolerance of Uncertainty in Fragile X Syndrome (FXS) and Cornelia de Lange Syndrome (CdLS).

The Intolerance of Uncertainty may explain the relationship between autism and anxiety in FXS. It is characterised by distress or difficult functioning during uncertain or unpredictable situations, a strong preference for predictability, and cognitive or behavioural paralysis or inhibition. It has been identified as an important risk factor for the development and maintenance of anxiety in the general population and has been implicated as a critical factor underpinning anxiety. Understanding the relationship between the Intolerance of Uncertainty and anxiety in FXS is important for the development of tailored interventions to reduce anxiety in rare genetic syndromes associated with intellectual disability.

You can read the full article by Smith et al at https://onlinelibrary.wiley.com/doi/10.1111/jir.70024. For a shorter version go to https://fraxi.org/it/researchers-dive-deep-into-relationships-between-anxiety-and-intolerance-of-uncertainty-in-fragile-x-syndrome/

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.

14/07/2026

FraXI at the 13th European Conference on Rare Diseases & Orphan Products (ECRD 2026)

On the 3rd and 4th June 2026, FraXI’s President Dr Kirsten Johnson attended 2026 ECRD organised by EURORDIS-Rare Diseases Europe in collaboration with Orphanet at the O2 Universum Congress Centre in Prague and online.
ECRD is the world’s largest patient-led rare disease policy event, and this year, the theme was Rare Diseases in a Changing & Competitive Europe: Shaping policies to address the unmet needs of people living with rare diseases.

This edition of the conference marked a pivotal milestone in a broad, inclusive,
multi-stakeholder process towards the launch of a European Blueprint for Rare Diseases – a shared vision designed to deliver lasting impact for people living with rare conditions across Europe by encouraging collective effort and dialogue, fostering shared ownership among patients, policymakers, clinicians, researchers, industry, and health system leaders.

Our president Kirsten Johnson chaired a session on mental health titled "Rethinking mental health in rare conditions: from undefined challenges to collaborative solutions" on the 4th of June. She was joined by experts from around the world to discuss what mental health challenges look like for people living with rare diseases (PLWRD) while drawing attention to how they are often misunderstood, underresearched, and excluded from integrated care models.

You can read more about the European Blueprint and the conference athttps://download2.eurordis.org/ecrd/ECRD_2026/ECRD2026_Full_Programme.pdf

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.

06/07/2026

The Fragile X and Autism Gordon Research Conference (GRC), successfully wrapped up in Maine on Friday, June 19, after five days of discussion on cutting-edge research. This year marked a special milestone for FraXI, as we participated for the first time, gaining a unique opportunity to learn firsthand about the state-of-the-art science shaping the future of Fragile X research and therapeutic development.

FraXI’s president Dr Kirsten Johnson said: “This environment led to many fruitful conversations on integrating the voice of lived experience into research design and development. We thank the organisers for including the global voice of fragile x advocacy, Fragile X International, at this conference. And a huge thanks to all of the researchers and clinicians who have devoted their careers to fragile x research. Understanding the biological mechanisms underlying fragile x syndrome is key, and we look forward to future collaborations.”

More details about the conference at https://fraxi.org/reporting-from-the-gordon-research-conference-mechanistic-insights-and-therapeutic-development-for-fragile-x-and-neurodevelopmental-disorders/

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.

02/07/2026

US-based research on caregivers – perceived behavioural challenges in FXS

Carers of people with FXS are an important voice in research as they are part of the stepping stones between research discoveries and clinical applications.

US-based researchers have incorporated the voices of caregivers of people living with FXS in the Aberrant Behavior Checklist Community (ABC-C) which is an observer-reported outcome measure that captures many of the behavioral concerns associated with FXS such as irritability, anxiety, and preference for solitary activities. Their goal was to establish the content validity of the ABC-C FXS domain structure in parents/caregivers of children with FXS and determine whether it is fit-for-purpose for measuring treatment benefit in clinical studies of FXS.

Find out more about the research at https://fraxi.org/us-based-research-on-caregivers-perceived-behavioural-challenges-in-fxs/

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.

25/06/2026

New study unpacks cerebral cortex morphometry and relaxometry in male children with Fragile X Syndrome and Autism

Cortical thickness is a macro-structural measure and therefore includes contributions of multiple microstructural features including myelination and cell density. Previous studies have proposed that cortical thickness may have an association with age and cognitive functioning. It is difficult to spot differences in the way cortical thickness impacts males living with FXS and those who live with other intellectual conditions. Employing a motion-robust quantitative brain imaging method to enable accurate measuring of cortical thickness, the authors conducted a study comparing the effects of cortical thickness in 50 male participants with Autism Spectrum Disorder (ASD) and 11 with FXS.

About 30-50% of males living with FXS meet the criteria for ASD, making FXS the most studied mono-genetic model of ASD.

Understanding differences in developmental trajectories and brain structural differences between FXS and autism may have potentially important implications for intervention strategies. If more studies incorporating wider age ranges and gender emerge, such patterns of group differences may help identify developmental windows during which imaging markers are most informative for linking brain features to symptom profiles and treatment response.

Read more about the article at https://fraxi.org/new-study-unpacks-cerebral-cortex-morphometry-and-relaxometry-in-male-children-with-fragile-x-syndrome-and-autism/

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.

18/06/2026

An educational tool for healthcare providers’ better understanding of women with FXPOI: new study!

For women who are diagnosed with Fragile X-associated primary ovarian insufficiency, or FXPOI, the journey from pre-diagnosis to post-diagnosis care can be challenging due to gaps in the knowledge of healthcare providers. Approximately 20% of women who carry the FMR1 premutation experience FXPOI, making FXPOI the most common Fragile X Premutation Associated Condition. However, it is the most underdiagnosed. The authors of this study seek to increase awareness of FXPOI and efficiency and speed of the diagnosis journey by proposing to introduce an educational tool to equip professionals with advanced knowledge on the condition.

You can read more about the article at https://fraxi.org/u-s-researchers-develop-educational-tool-for-healthcare-providers-better-understanding-of-women-with-fragile-x-associated-primary-ovarian-insufficiency-fxpoi/

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.

15/06/2026

A team of expert researchers and FraXI’s board members have published a position paper urging researchers, clinicians, funders, and policymakers to work collaboratively to reshape the research and treatment landscape for FXS. The underlying message of the paper is that we need a coordinated, holistic, and person-centred approach to improving the lives of people with FXS.

The paper calls for a future where research and clinical efforts align with emerging integrated guidance and strengths-based perspectives, ensuring that scientific progress translates into meaningful improvements for people with FXS and their families.

Read the full position paper here https://fraxi.org/advancing-research-and-treatment-in-fragile-x-syndrome-a-call-for-holistic-ethical-and-inclusive-research/

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.

14/06/2026

We are pleased to announce that the Gordon Research Conference on Fragile X Syndrome and Neurodevelopmental Conditions begins today. Chaired by Sebastien Jaquemont and David Nelson, and vice-chaired by FraXI advisors Claudia Bagni and Peng Jin, the Gordon Research Conference on Fragile X Syndrome, taking place in Maine, United States, June 14th–19th, brings together researchers with shared interests in the field of FXS and related conditions.

The event is a premier international scientific conference, focused on advancing science through the presentation of cutting-edge and previously unpublished research, prioritizing discussion time after each presentation, and fostering informal interactions among scientists of all career levels.

The conference program features a series of speakers and moderators from institutions and organizations around the world, focusing on the latest developments in the field. FraXI President Kirsten Johnson will moderate a discussion on "Clinical Trial Methodologies and N of One, N of Few."

This is the first time FraXI has attended the Gordon’s Research Conference on FXS. Many thanks to the organisers for welcoming our participation. This is a real opportunity to elevate the voice of lived experience in regard to clinical trial design and development, and to share our lived reality with scientists and researchers.

More details about the conference at https://fraxi.org/gordon-research-conference-june-14-19-2026-maine-usa-mechanistic-insights-and-therapeutic-development-for-fragile-x-and-neurodevelopmental-disorders/

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.

10/06/2026

We are very proud to announce that today marks the beginning of a webinar series led by Dr Marcia Braden, titled "Understanding Fragile X Syndrome with Dr Marcia Braden."

The event is reserved for FraXI’s full members and will last approximately one hour on four selected dates in June, August, September, and October.

Dr Marcia Braden is a psychologist with over forty years of experience supporting families and individuals with Fragile X Syndrome. She has also been a pivotal member of FraXI’s Board of Advisors, and was influential in founding FraXI’s clinical arm which unites researchers and medical practitioners in supporting the Fragile X Community in everyday life.

"I believe the most precious gift I've been given since I was born is kindness and understanding," says Marcia. “When I work with patients with FXS, I spend a lot of time understanding what works for them and what doesn't. I believe that being open to understanding allows us to dig deeper. People with FXS are very good at recognizing kindness: if you act kindly, they will immediately recognize you as someone they can trust. I think this generates a great deal of kindness in me.”

A hertfelt thank you to Dr Marcia Braden for being with us and for being part of our community!

You can learn more about Dr Marcia Braden by reading the interview she gave to FraXI at https://fraxi.org/in-conversation-with-dr-marcia-braden/

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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