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/
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Visit the RECONNECT MyFXReserach post for more infromation:
Clinical Trial RECONNECT: ZYN002 Gel | MyFXResearch Portal (fragilex.org)
Exploring Potential Barriers to the Fragile X Syndrome Cascade Screening Process
Researchers at the University of Memphis and Cincinnati Children's Hospital Medical Center are conducting a research study exploring the relationship between barriers and the FXS screening process among family members.
Grief and Bereavement Experiences of Children with Intellectual Disabilities
Researchers at the University of Maryland are looking to understand how children with Fragile X syndrome (FXS) and other intellectual disabilities grieve the loss of a loved one. If you are the parent or guardian of a child with FXS or another intellectual disability who has experienced the death of someone in their life when they were 5-17 years old, researchers want to talk to you.