In response to yesterday’s news from Scorpion Capital regarding Harmony Biosciences, we have received the below community-facing statement. Harmony Biosciences shares information about the company’s drug WAKIX, which is used to treat excessive daytime sleepiness (EDS) or cataplexy in adults with Narcolepsy.
If you have questions, please reach out to info@pwsausa.org.
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On behalf of Harmony Biosciences:
At Harmony Biosciences, we specialize in developing and delivering treatments for rare neurological diseases that others often overlook. We believe that where empathy and innovation meet, a better life can begin for people living with neurological diseases. Our team of experts from a wide variety of disciplines and experiences is driven by our shared conviction that innovative science translates into therapeutic possibilities for our patients, who are at the heart of everything we do.
WAKIXยฎ, a first-in-class medication, is approved by the U.S. Food and Drug Administration for the treatment of excessive daytime sleepiness or cataplexy in adult patients with narcolepsy and has been commercially available in the U.S. since Q4 2019. WAKIX is safe, effective and enabled to be marketed around the globe. Its safety and efficacy have been evaluated by independent, peer-reviewed medical journals as well as regulatory bodies including the U.S. FDA, the E.M.A. and in other countries around the world.
Since Harmonyโs founding in 2017, it has been our first core value to keep patients at the heart of everything we do. We treat all patient communities with empathy, compassion and commitment. We stand shoulder-to-shoulder with people living with rare diseases and the communities that support them.
In addition to high-touch patient support programs, our teams engage with patient advocacy groups and broad non-profit stakeholders, working to provide support for people living with rare neurological diseases. In 2019, Harmony Biosciences was selected as a recipient of Life Sciences Pennsylvaniaโs (LSPA) 2019 Patient Impact Award. The Patient Impact Award recognizes a medicine, therapy, device, company, or organization with operations in Pennsylvania that made a significant contribution to the quality of healthcare for patients.
We stand by the safety and efficacy of our product and our commitment to delivering it to patients in a way that is ethical and dignified. Ultimately, our goal at Harmony is as much about delivering, innovative, patient-centric solutions as it is about infusing the lives of those living with rare diseases with hope, dignity, and the confidence that comes from knowing they are no longer overlooked, they are no longer alone, and they are at the heart of everything we do.
Perry A. Zirkel has written more than 1,500 publications on variousย aspects of school law, with an emphasis on legal issues in special education.ย He writes a regular column for NAESPโsย Principalย magazine and NASPโsย Communiquรฉย newsletter, and he did so previously forย Phi Delta Kappanย andย Teaching Exceptional Children.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Childrenโs Institute of Pittsburgh. She graduated fromย Duquesne University receiving her Bachelorโs and Masterโs degree in Education with a focus on elementary education, special education, and language arts.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Programย (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Childrenโs Hospital in Denverย supporting families and school districts around the United Statesย with their childโs Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.