A message to the Fragile X community from the Team at Harmony Biosciences
Last year, Harmony Biosciences announced the acquisition of Zynerba Pharmaceuticals and the RECONNECT study. In addition to this program and the innovative product, we also added members of the Zynerba team to Harmony. Over the past six months, the Harmony team has worked alongside our new colleagues to create and deepen existing ties with members of the Fragile X syndrome (FXS) community. While the path to bringing treatments to patients and their families is often challenging, all of us at Harmony stand united with you throughout this journey and in the completion of the RECONNECT trial.
During February 2024 Advocacy Day, Harmony team members had a chance to join our new colleagues alongside the Fragile X community and NFXF for the first time. Our team’s experience in Washington, DC deepened both our understanding and empathy for those living with Fragile X, their caregivers and families. It’s why we’re constantly working to make the clinical trial experience as easy as possible for families.
Patients and caregivers can now participate in the RECONNECT trial completely from their home through a combination of at-home and virtual visits. The At-Home option was introduced to help lessen potential barriers for families who live far from a RECONNECT study site or find it too challenging to go to a physician’s office for study visits. Whether you choose for your child to participate through this new At-Home option or at a RECONNECT study site, your participation is critical to help complete the RECONNECT trial.
Interested? Learn more about the RECONNECT trial by visiting: https://fragilex.org/opportunities-for-families/reconnect/
learn more
Visit the RECONNECT MyFXReserach post for more infromation:
Clinical Trial RECONNECT: ZYN002 Gel | MyFXResearch Portal (fragilex.org)
Gene therapies in action: a look at examples of successful treatments
Although there are currently no options for approved or experimental gene therapies for FXS, gene therapies in other diseases and conditions do exist and are helping people today! Read the blog to see some examples of gene therapy in the real world!
EXPERIENCE Clinical Trials – Join Today!
You may have heard about EXPERIENCE (Evaluation of Fragile X Experience in Cognition Expression) clinical trials as the Tetra studies or the studies of BPN14770 in Fragile X syndrome. EXPERIENCE is now being managed by Shionogi and clinical trial sites across the U.S. are still enrolling qualified male participants aged 9-45.