The National Fragile X Foundation attended the 6th International Conference on Fragile X Premutation Associated Conditions, a biennial conference which, this year, took place in Italy. The meeting was attended by over 100 dedicated researchers and clinicians from around the world. Most of the presentations and discussions revolved around developing a better understanding of premutation-related conditions, including FXTAS, FXPOI, and other emerging conditions, in hopes of developing new and better treatments. We were excited to see many familiar faces, meet more Fragile X experts from around the world, and reunite with many past NFXF Jr. Investigators.
The NFXF led a discussion regarding the updating of the family-friendly treatment recommendations for FXTAS. The updated recommendations will be published early next year following input from numerous professionals, patients, and their caregivers. A companion publication for clinicians is also being drafted.
A full report from the conference will be published in the months to come. The NFXF will share more details, impact, and next steps with you then.
Most importantly, each presenter thanked the individuals and families who participated in their research. Without you, we would not be able to make progress and learn more about the Fragile X premutation. Thank you!