Harmony Biosciences' Patients at the Heart program underscores our ongoing commitment to support the comprehensive needs of people affected by rare neurological diseases.
2023 Patients at the Heart awards were presented to nonprofit organizations that are working to support and address the challenges of people living with sleep disorders and rare neurological diseases who experience excessive daytime sleepiness (EDS).
For questions or more information, feel free to contact email@example.com.
Stay tuned for our next Patients at the Heart program announcement in 2024!
Kleine-Levin Syndrome Foundation
Awareness & Patient Support Progression
This initiative builds educational and support resources for people with Kleine-Levin syndrome (KLS) and the broader scientific community by creating a new ambassador program that connects patients, caregivers, educators, and professionals to enhance care.
Prader‐Willi Syndrome Association | USA
PWS Sleep Within Reach Resources
This program educates healthcare professionals, caregivers of people with Prader-Willi syndrome (PWS), as well as residential and educational staff on the most misunderstood forms of sleep disorders, including those among people with PWS.
Social Support Survey Publication & Dissemination
In April 2021, Project Sleep conducted a global survey on the social experiences of individuals with narcolepsy and idiopathic hypersomnia (IH). With over 1,200 responses, this project will enable them to analyze and publish academic findings about psycho-social issues. Survey results have the potential to shape future social support programs and improve health outcomes for those with narcolepsy and IH.
Empowering Next Generation Advocates: Virtual Conference and Intro to EL-PFDD Initiative
This initiative entails preparing a letter of intent for FDA submission to host an Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting for IH. They will organize a webinar for people with central disorders of hypersomnolence and their families, featuring expert sessions on diagnosis, management, advocating amid a changing research landscape, supporting future research, and concluding with progress made on the EL-PFDD.
Society for Women’s Health Research (SWHR)
The Impact of Narcolepsy on Women’s Health Across the Lifespan: Women as Caregivers
This program aims to combat stigma and delayed diagnosis of narcolepsy in children. SWHR will provide educational resources empowering mothers advocating for their children within K-12 school systems by addressing stigma and securing necessary support.
“Combining empathy with innovation to improve the lives of people living with rare neurological diseases is a mission that drives everyone at Harmony Biosciences. We are pleased to support a diverse group of organizations that have each developed new and innovative patient-centric initiatives to help address the unique needs of people living with rare neurological diseases, or those in a broader sleep disorder community.”
Cate McCanless, Chief Corporate Affairs Officer, Harmony Biosciences
All awards are paid directly to the requesting organization, and never to an individual. No funding is offered or provided in exchange for endorsing or prescribing Harmony products or for a commitment to continue prescribing Harmony products. In other words, any quid pro quo is strictly prohibited.
Any funding provided by Harmony will be in compliance with all applicable laws, rules, and regulations.