Patients at the Heart

Patients at the Heart Program

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).

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Stay tuned for our next Patients at the Heart program announcement in 2024!

2023 Program Awards

Over the past five years, Patients at the Heart has funded more than $450,000 in awards toward innovative, patient-centric programs. Programs currently being supported include:

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.

Project Sleep
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.

Sleep Consortium
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.

Click to learn more about what programs Patients at the Heart supported in 2019, 202020212022, and 2023.

“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.