PLYMOUTH MEETING, PA — Community and nonprofit organizations throughout the country that are working to support patient-centric initiatives within rare neurological diseases and sleep disorders will have the opportunity to receive funding to support innovative initiatives, thanks to the continuation of Harmony Biosciences’ Patients at the Heart and Progress at the Heart programs. Harmony Biosciences (“Harmony”) (Nasdaq: HRMY), a pharmaceutical company dedicated to developing and commercializing innovative therapies for patients with rare neurological diseases, launched the programs in 2019 and 2021, respectively, and this past week announced the reopening of the application period for 2023.
The annual programs have supported diverse initiatives ranging from a retreat to provide rare disease caregivers with new skills to care for their loved ones and develop their own self-care practices to a behavioral and educational program for underrepresented high school students to raise awareness of the importance of healthy sleep for the prevention of cardiovascular and other chronic diseases.
Both the Patients at the Heart and Progress at the Heart funding programs provide opportunities for organizations providing innovative, comprehensive, and patient-centric initiatives that either directly support the unique challenges and profound needs of people living with sleep disorders and rare neurological diseases who experience excessive daytime sleepiness (EDS) or help achieve greater equality within rare neurological disease communities.
“People living with sleep disorders often face stigma from a lack of understanding about their diagnosis and the needs that follow,” said Claire Wylds-Wright, MFA, CEO of the Hypersomnia Foundation, a 2022 Patients at the Heart program recipient for their #UNIGHT program, an initiative that fosters peer-to-peer support for individuals with sleep disorders. “The Patients at the Heart funding enabled us to address the psychosocial challenges tied to sleep disorders by bringing individuals together in a supportive forum that is important to those who often feel isolated due to their diagnosis. This program is already being met with overwhelming participation from our community, with the inaugural event taking place in January 2023.”
“Achieving lasting equality across sleep disorder communities starts with developing effective positive educational messaging to racially and ethnically diverse individuals, including adolescents,” said Brooke Aggarwal, EdD, MS, FAHA, Assistant Professor of Medical Sciences at Columbia University Medical Center. The Reinforcing Essentials of Sleep for Teens (REST) program, a 2022 Progress at the Heart award recipient, is a behavioral and educational program targeted to high school students in the Washington Heights community of New York City to raise awareness of the importance of healthy sleep for the prevention of cardiovascular disease and other chronic diseases. “Through this program, we are able to engage with multicultural communities to foster partnerships focused on the effects of poor sleep on the risk of cardiovascular disease.”
Funding applications for both programs in 2023 open on Tuesday, February 28 in recognition of “Rare Disease Day,” the annual awareness day for the 300 million people affected by rare diseases worldwide.
2023 Patients at the Heart Program Information
Since its inception in 2019, the Patients at the Heart program underscores Harmony’s ongoing commitment to support the comprehensive needs of people affected by rare neurological diseases. Applications for 2023 and submission information can be accessed at: https://www.harmonybiosciences.com/funding-programs/patients-at-the-heart/.
2023 Progress at the Heart Program Information
Sleep health disparities are impacted by ethnicity, socioeconomic status, discrimination, geography, social patterns, and access to healthcare, as well as other complicating factors. Since 2021, the Progress at the Heart program has funded innovative programs that address disparities, injustice, and inequities in the rare neurological disease and sleep disorder communities. Applications for 2023 and submission information can be accessed at: https://www.harmonybiosciences.com/funding-programs/progress-at-the-heart/.
Applicants must be a 501(c)(3) or similarly credentialed nonprofit organization and applications will be reviewed by a cross-functional team of Harmony Biosciences employees.
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