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Fragile X International Conference 17-19th November 2023 - by Anne Eccleshall

In November, I went to Gembloux, Belgium to represent the Fragile X Society UK at Fragile X International’s second annual conference.





What does FraXI do?

FraXI’s mission statement says - “Fragile X International is a network of country family organisations who will work together to promote, support and strengthen the FX identity as an added value to society. We aim to increase knowledge about the strengths of people with FXS; highlight the areas where they may need support; raise awareness and encourage research around FXPAC; and share knowledge in the hope that one day FX will be recognised for the benefit it brings to society.” Here is a link to their site (fraxi.org)https://fraxi.org/default.asp#aboutusFragileXInternational (fraxi.org). FraXI currently has 20 member countries including the latest members Australia and New Zealand and 6 affiliate members including several South American countries. And the number is still growing!


News from member countries

Each country had the opportunity to tell the conference about their own society and to share achievements and challenges from the year. The societies are very different – some are well-established, others very new. Some have Government funding, others like ours in the UK rely on donations, grants and fundraising. Some have paid members of staff, others rely entirely on volunteers. Some have 40 members, others like the UK have over 2500. But they all have similar aims, that is, to raise awareness of Fragile X Syndrome and associated conditions, to support families and to encourage and share the results of research. 


Here are just a few of the initiatives we heard about – 


  • Every year the Danish society provide a three-day training course for people working in education, when they bring together families, psychologists and doctors and give them the opportunity to “walk and talk” together. 

  • Fragile X France has set up online support groups for adult and child siblings of people with Fragile X. This has expanded to include a group for grandparents too.

  • The Italian society has an established scheme funded by the Erasmus scheme where young adults with Fragile X have the opportunity to go to Malta for work experience.


Sharing knowledge 

Jorg Richstein (Vice Chair of FraXI) and Professor Frank Kooy (University of Antwerp) gave two very interesting talks explaining the current different types of research in Fragile X and the procedures for drug development and clinical trials.


Current priorities for FraXI

  • Work on EU Fragile X guidelines which describe services that people with Fragile X are likely to need. Development of a paper celebrating the strengths of people with Fragile X

  • Developing links with other international groups such as Eurordis https://www.eurordis.org/ and Rare Diseases International https://www.rarediseasesinternational.org/

  • Managing advocacy - how do we find out what people with Fragile X want for their lives? Developing a survey for adults with Fragile X

And finally…

The most important part of the weekend was getting to know people from all over the world whose lives are affected by Fragile X. It really feels like one big international family! 

Delegates outside FraXI’s registered office in Brussels.





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