HARMONY BIOSCIENCES ANNOUNCES ITS NEWEST PROGRESS AT THE HEART AND PATIENTS AT THE HEART AWARDEES
Harmony Biosciences has announced the newest recipients of its Progress at the Heart and Patients at the Heart Awards programs, which provide funding support for community and nonprofit organizations working to develop innovative, patient-centric initiatives that help drive meaningful change for individuals affected by rare neurological diseases.
“Harmony Biosciences is expanding our commitment to the rare disease community, allowing us the opportunity to broaden our signature Progress at the Heart program to directly support initiatives that address disparities and inequities in multiple rare diseases, which often limit access to optimal care,” said Cate McCanless, Chief Corporate Affairs Officer at Harmony Biosciences. “Through Progress at the Heart and our broader community engagement efforts, we are dedicated to nurturing thoughtful solutions that help promote research, advocacy, and education, fostering the harmony that drives meaningful progress for patients with unmet needs.”
PROGRESS AT THE HEART
American Academy of Neurology (AAN) – Health Equity Program
The Health Equity Program continues to enhance neurologists' awareness of healthcare inequalities to improve health systems and policies in neurological practice and care. Key components include participant meetings to interact with cohort members, program alumni, and AAN leaders, as well as activities like curriculum development, mentorship, educational sessions, workgroup meetings, and projects that promote health equity.
Geisinger Health – Wake Up and Learn
The Wake Up and Learn initiative continues to provide screening and educational resources to detect and address sleep disorders in students. By expediting the process of recognizing, diagnosing, and treating these issues, the program supports student athletes and their networks in enhancing athletic performance and effectively improving sleep health.
National Fragile X Foundation – Belonging Project
The Belonging Project strives to cultivate a sense of "belonging" within the Fragile X syndrome community. Using a survey tool to collect data on equity, community involvement, and demographic details, the initiative guides future research and bolsters grant applications, conference presentations, and academic publications.
Project Sleep – Narrative Change for Sleep Disorders
In collaboration with USC's Norman Lear Center's Hollywood, Health & Society program, this program seeks to raise awareness about sleep disorders by collaborating with television writers, networks, and streaming platforms to portray narcolepsy and sleep disorders accurately, reduce stigma, and shape public perceptions. The initiative also focuses on creating authentic character representations that truly reflect the diversity of individuals with sleep disorders.
The University of Arizona
Collaboration with Native Nations in Arizona to Improve Awareness of Fragile X Syndrome
In partnership with the Wassaja Center at the University of Arizona, this program equips Native Nations with educational materials on Fragile X syndrome. Collaborating with four tribes will lead to focus groups that address disparities and barriers to care, and develop culturally sensitive educational initiatives respectful of indigenous traditions.
Teacher Education Awareness Curriculum for Hypersomnia and Narcolepsy (TEACH)
This psychoeducational program is designed to assist adolescents with narcolepsy and other sleep disorders academically and socially through early detection and symptom comprehension. It emphasizes destigmatization, provision of educational accommodations, and advocacy primarily within the Mexican American community, with the goal of future nationwide outreach.
PATIENTS AT THE HEART
Raregivers – Voice of Fragile X Caregivers
This program offers a six-week group discussion for selected participants to delve into crucial caregiving topics for individuals with Fragile X syndrome, utilizing interactive virtual sessions and visually appealing infographics. By providing insights and support, the program aims to enhance awareness among families, medical professionals, and the rare disease community regarding the unique challenges of parenting individuals with Fragile X syndrome.
Harmony Biosciences will announce the opening of the application period for Progress at the Heart in 2025. To learn more, visit www.harmonybiosciences.com.
About Harmony Biosciences
Harmony Biosciences is a pharmaceutical company dedicated to developing and commercializing innovative therapies for patients with rare neurological diseases who have unmet medical needs. Driven by novel science, visionary thinking, and a commitment to those who feel overlooked, Harmony Biosciences is nurturing a future full of therapeutic possibilities that may enable patients with rare neurological diseases to truly thrive. Established by Paragon Biosciences, LLC, in 2017 and headquartered in Plymouth Meeting, PA, we believe that when empathy and innovation meet, a better future can begin; a vision evident in the therapeutic innovations we advance, the culture we cultivate, and the community programs we foster.