Some caregivers and parents of individuals with FXS have given CBD supplements to the individuals they care for and learning about their insights and experiences is important. This was the first study to learn more about their observations and opinions regarding CBD to treat FXS.
Most individuals with FXS cannot state themselves that they are anxious and self-report is needed in current standardized assessments. The information analyzed in this study will result in the development of a measure where observable and quantifiable data on anxiety in those with FXS can become an outcome measure to be used in future research/trials.
Zynerba presented about their prior results and their current RECONNECT during the 2022 Industry Updates keynote session at the 18th International Fragile X Conference.
Healx Ltd presented about the IMPACT-FXS trial during the 2022 Industry Updates keynote session at the 18th International Fragile X Conference.
Asuragen presented about the progress of Fragile X molecular testing during the 2022 Industry Updates keynote session at the 18th International Fragile X Conference.
Tetra Therapeutics presented about their prior results and current BPN14770 trials during the 2022 Industry Updates keynote session at the 18th International Fragile X Conference.
AAP/CDC course, "Identification, Management, and Caring for Children and Adolescents with Fragile X Syndrome" will be available for pediatricians and other healthcare professionals through August 1, 2025, on the AAP PediaLink platform.
Watch this segment from Lifetime’s daily morning show, The Balancing Act, “Behind the Mystery of Fragile X Syndrome: A Genetic Disorder That Can Cause Learning and Behavior Challenges.”
This is the first time that Fragile X premutation carriers have been tracked in a longitudinal study. This study provides evidence for early markers of FXTAS that may be helpful in eventually identifying the best candidates for early, preventive intervention.
Jayne Dixon-Weber shares top takeaways from Barbara Haas-Givler's conference presentation strategies for improving executive functioning for girls with Fragile X syndrome
Panelists Drs. David Hessl, Emily Allen, Deborah Hall and Randi Hagerman share their expertise on the Fragile X premutation at the 18th International Fragile X Conference.
The always popular Bike To X Out Fragile X fundraising event draws almost 70 riders for a unique bike ride through Des Moines and Waukee, Iowa. Learn more about their day.
It's that time of year! Join other rare disease advocates for in-district meetings with your Congress members and staff. You can help represent the Fragile X community!
This event has passed. Stephen O'Quinn and the Zynerba team extend the opportunity to meet families at the 18th International Fragile X Conference and learn more about the RECONNECT trial.
The first published publication from the International Fragile X Premutation Registry Advisory Committee. This International Fragile X Premutation Registry is an important first step and can serve as a useful tool for clinicians and researchers in the field.
