Fragile X International (FraXI) thanks everyone for the widespread use of the term Fragile XPremutation 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, so…
Fragile X International and its members have worked together to publish several papers in recent years. FXPAC In 2020, a paper was published calling for a new name for FMR1 premutation-associated conditions. The result was Fragile X Premutation Associated Conditions being launched and now adopted by the international community. Here is the 2020 article published…
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…
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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