by Jeffrey M. Dayno, MD
President and Chief Executive Officer of Harmony Biosciences

As many of you may know, Harmony Biosciences recently completed our acquisition of Zynerba Pharmaceuticals. I’m sure that when you heard this news, you had some questions about what this news means to your community.

I want to assure you that we are excited to progress Zynerba’s work and committed to advancing the development and delivery of a potentially transformative treatment for the symptoms of Fragile X syndrome, as well as continue to build upon the legacy of Zynerba’s commitment and partnership with this community.

For the past six years, Harmony Biosciences has been dedicated to bringing innovation and hope to people living with rare neurological diseases. We are approximately 225 employees strong, with team members across our organization who are passionate and committed to taking new therapies from the clinic to the medicine cabinet, and providing support for patients, providers and the entire rare disease community.

After 12 years as a practicing neurologist taking care of patients, followed by over 25 years in the pharmaceutical industry, I personally have seen the impact that developing and delivering innovative treatments can have on patients and their families. While the journey to bring a treatment option to patients can be long and winding, the potential that innovative treatments can have on patients can be profound. We believe that ZygelTM could become the first medicine to be approved for the treatment of behavioral symptoms in Fragile X syndrome and we will be relentless in our pursuit to bring this innovation to the Fragile X community.

This includes completion of the RECONNECT trial. If you have ever considered having your son or daughter participate in a clinical trial, I invite you to talk with your child’s doctor about participating.  You can learn more about RECONNECT on the MyFXReseach portal at https://fragilex.org/opportunities-for-families/reconnect/, including the recently introduced option to participate completely from your home if going to a clinic is too challenging or you do not live close to one of the clinical trial sites. I am grateful to all the families who have already made the decision to participate in RECONNECT and to those who will join them on this journey.

At Harmony, we believe that where empathy and innovation meet, a better life can begin for patients living with rare neurological diseases and their families. We have long said that we keep patients at the heart of everything we do, and we are honored to have this opportunity to support patients living with Fragile X syndrome. We hope you will welcome us into your community.

Best regards,

Jeffrey Dayno, M.D.
President and Chief Executive Officer
Harmony Biosciences

about
Author Hilary Rosselot

Hilary Rosselot
Hilary joined the NFXF team in 2019. Prior to joining the NFXF team, she worked at the Cincinnati Fragile X Research and Treatment Center for over five years. She has experience as a clinical research coordinator across many types of clinical trials and served as the clinical research manager for the Cincinnati program. She earned a bachelor’s degree in psychology, a master’s, and is a SOCRA certified clinical research professional (CCRP). She enjoys time with family and friends, a great book, a strong cup of coffee and, of course, a good laugh!

learn more

Visit the RECONNECT MyFXReserach post for more infromation:

Clinical Trial RECONNECT: ZYN002 Gel | MyFXResearch Portal (fragilex.org)

  • Observable symptoms of anxiety in individuals with Fragile x syndrome.

Observable Symptoms of Anxiety in Individuals with Fragile X Syndrome: Parent and Caregiver Perspectives

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.