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)
The Impact of the COVID-19 Pandemic on School-Aged Children with Fragile X Syndrome
The pandemic caused by the spread of the coronavirus disease (COVID-19), beginning in early 2020, had an impact beyond anything experienced in recent history. It is important to understand how this pandemic era has impacted school-aged children with FXS so that we may continue to successfully navigate the changes that come with living through a pandemic and to understand what we can improve in the case of a future pandemic.
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.