Fragile X International (FraXI) thanks everyone for the widespread use of the term Fragile X Premutation Associated Conditions (FXPAC) to describe issues affecting fragile x premutationcarriers (see Notes). Just as Fragile X Syndrome is an umbrella term which covers the many issues that may affectsomeone with more than 200 CCG repeats of the FMR1 gene,…
One hundred and five kilometres. Five cities. One vision. Bríd Quinn is a mum of two daughters who live with Fragile X Syndrome. She has challenged herself to run five half marathons across five European cities in their honour, and to raise awareness about Fragile X Syndrome. We had the opportunity to chat with Bríd…
Fragile X International and its members have worked together to publish several papers in recent years. The Joys of Fragile X In October 2024, FraXI led in publishing The joys of fragile X: Understanding the strengths of fragile X and delivering a diagnosis in a helpful, holistic way. This article provides a positive framework for…
New Study on the Relationship Between the Fragile X Messenger Ribonucleoprotein (FMRP) and the Development of Speech and Vocabulary in Young Boys living with Fragile X Syndrome Contributors Stephen R Hooper, John Sideris, Deborah R Hatton and Joanne R Roberts have successfully published a groundbreaking new study titled “The Contribution of FMRP to the Development…
The 8th Re(ACT) Congress and 6th International Rare Diseases Research Consortium (IRDiRC) were held jointly from the 5th to 7th of March 2025 in Brussels. The event is one of the most important and diverse colloquiums for leading experts, advocates and emerging talents in the field of rare conditions research to discuss and share knowledge…
Key findings from the EURORDIS #RareBarometer survey on the impacts of living with a rare condition have now been finalised and can be accessed here. Conducted between July and September 2024, the survey gathered data from 9591 participants across Europe. We have been sent the Fragile X Syndrome responses as well as the general info….
International Fragile X Awareness Day is celebrated by countries around the world. We welcome everyone joining in to celebrate all things Fragile X on October 10th as we work together to build an inclusive and caring society which values and affirms each of our family members. X/X/2024 We are a force! We are people with…
Many countries have celebrated X.X. (October 10th) for over 10 years as International Fragile X Awareness Day – you can read the history of this on our website. All of Fragile X International’s Founding Members celebrate October 10th nationally, and together these countries have raised awareness across borders, unified in their desire to promote inclusion…
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Celebrating and supporting those living with Fragile X Syndrome and Fragile X Premutation Associated Conditions around the world
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