A message to the Fragile X community from Dr. Dayno on behalf of the team at Harmony Biosciences:
Representatives from Harmony Biosciences will be attending the 19th International Fragile X Conference with us in Orlando, Florida. They are excited to come together with the Fragile X community to listen, learn, and help pave the way for brighter futures.
If you see a member of the Harmony Biosciences team, don’t hesitate to say “hello” and ask about about their commitment to the Fragile X community and advancing science and treatment options.
learn more
Visit the RECONNECT MyFXReserach post for more infromation:
Clinical Trial RECONNECT: ZYN002 Gel | MyFXResearch Portal (fragilex.org)
Exploring Parents’ Concerns Regarding Long-Term Support and Living Arrangements for Their Children with Fragile X Syndrome
Given the limited data regarding future planning specific to individuals with Fragile X Syndrome (FXS) and the growing population of this community, this study sought to explore the concerns and challenges caregivers of individuals affected by FXS encounter when considering long-term support plans.
Long-Term Follow-Up of Telehealth-Enabled Behavioral Treatment for Challenging Behaviors in Boys with Fragile X Syndrome
This study showed the significant impact that behavioral treatments can have on rates of challenging behaviors commonly exhibited by boys with FXS, particularly when parents are coached to implement the intervention with their child via telehealth.