PLYMOUTH
MEETING, Pa., July 25,
2023 /PRNewswire/ -- Harmony Biosciences selected the
latest round of nonprofit organizations for its Patients at the
Heart and Progress at the Heart awards, which provide funding
toward interdisciplinary community initiatives that address complex
challenges facing people living with sleep disorders and rare
neurological diseases.
Harmony Biosciences Holdings, Inc. ("Harmony") (Nasdaq: HRMY),
is a pharmaceutical company dedicated to developing and
commercializing innovative therapies for patients with rare
neurological diseases.
Over the last four years, Patients at the Heart has provided
funding for 22 initiatives working to address the holistic needs of
people and their families affected by sleep disorders and rare
neurological diseases.
"Women living with narcolepsy encounter distinct challenges that
persist throughout their lives, leading to additional health
burdens during pregnancy, lactation, and
caregiving," said Kathryn Schubert, President and CEO of
the Society for Women's Health Research, a Patients at the Heart
award recipient. "With the support of this funding, we can advance
our educational program 'The Impact of Narcolepsy on
Women's Health Across the Lifespan.' This new work
will focus on caregiving aspects, aimed at helping combat
stigma, promote timely diagnosis in children, and empower mothers
to advocate for their children within school systems by providing
educational narcolepsy resources and related support."
Progress at the Heart provides funding support for novel
initiatives addressing disparities, injustices, and inequities in
the rare neurological disease and sleep disorder communities. Since
its inception two years ago, it has provided funding for 13
initiatives.
"Receiving a Progress at the Heart award enables us to further
address social determinants of health predominantly affecting
Latino and Hispanic families at the US-Mexico border," expressed
Michael Grandner, PhD, Director of the Behavioral Sleep
Medicine Clinic at the University of
Arizona. "Through strategic local partnerships, health
literacy education, and culturally competent care sessions with
sleep medicine psychologists, our family-based initiatives are
vitalizing equitable sleep health and overall well-being within
this incredibly resilient yet underserved community. This progress
is particularly crucial as we enhance quality care amid
extraordinary humanitarian and public health challenges in the
region."
The Patients at the Heart awardees include the following
organizations:
- 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.
The Progress at the Heart awardees include the following
organizations:
- American Academy of Neurology (AAN) – Health Care Equity
Program
The annual Health Care Equity Program enhances 10
neurologists' knowledge of disparities and promotes more impactful
neurology and healthcare policies. Programs include meetings,
educational workshop sessions, and individual projects to help
close health disparity gaps.
- The University of Arizona
-
- Platicamos Sueno: Engaging Community Health Workers in Sleep
Health at the US-Mexico Border
This program expands upon
existing initiatives at the US-Mexico border through collaboration
with the Mariposa Community Health Center and their "Platicamos
Salud" program to train community health workers ("promotoras de
salud") to improve access to quality care through panels,
in-language educational resources and training sessions.
- QuE PASE? ("What Happens?"): Querying Everyday Perceptions
About Sleep Experiences
This project empowers Hispanic and Latino families at the US-Mexico
border to address sleep disorder and awareness gaps through a
family-based approach. The 20 families already enrolled will have
access to new programming focused on recognizing symptoms and two
sessions with a psychologist focused on sleep medicine to promote
overall health well-being.
- The University of Utah
– Nuestro Sueno: Focus Groups for the Development of a
Culturally-Tailored Sleep Health and CPAP Adherence Intervention
for Latino Couples
This project aims to fill the gap of
culturally adapted positive airway pressure (PAP) adherence
interventions for Latinos through rigorous qualitative research and
feedback from patients and community stakeholders. The insights
will inform the intervention's cultural appropriateness and
acceptability in the pursuit of future research.
Harmony will announce recipients for the next round of Patients
and Progress at the Heart awards in October
2023, continuing its commitment to the rare neurological and
sleep disorder communities.
"With empathy and innovation as our guiding principles, our
Patients and Progress at the Heart programs are an extension of our
commitment to collaborating with nonprofit community organizations
as they address the complex challenges of sleep and rare
neurological disorders beyond clinical care settings," said Cate
McCanless, Chief Corporate Affairs Officer at Harmony
Biosciences. "We acknowledge that a collective effort is
necessary to make meaningful change, and we believe these
initiatives have the potential to create a lasting, positive impact
on individuals and communities impacted by rare neurological
disorders."
To learn more about Patients at the Heart, please visit:
https://www.harmonybiosciences.com/funding-programs/patients-at-the-heart/.
To learn more about Progress at the Heart, please visit:
https://www.harmonybiosciences.com/funding-programs/progress-at-the-heart/.
About 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. Established by Paragon
Biosciences, LLC, in 2017 and headquartered in Plymouth Meeting, PA, 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. For more information, please
visit www.harmonybiosciences.com.
Harmony Biosciences Media Contact:
Cate McCanless
202-641-6086
cmccanless@harmonybiosciences.com
Harmony Biosciences Investor Contact:
Luis Sanay, CFA
445-235-8386
lsanay@harmonybiosciences.com
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SOURCE Harmony Biosciences