Project Addressing Sleep Issues Wins Harmony Biosciences Award

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by Patricia Inácio, PhD |

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The Prader-Willi Syndrome Association (PWSA) USA has earned a Patients at the Heart award from Harmony Biosciences.

Announced Wednesday on World Narcolepsy Day, which takes place every year on Sept. 22, the award was given to the project “Disordered Sleep: A Deep Dive for Parents and Practitioners.” Funds are intended to foster access to free tools and resources, as informed by focus groups and best sleep practices in Prader-Willi syndrome (PWS).

The award also will help finance a PWSA USA Virtual Sleep Summit, according to the company’s press release.

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Harmony’s Patients at the Heart program, which this year totals $74,000 in awards,  was created to address the challenges faced by people living with sleep disorders and rare diseases who experience excessive daytime sleepiness (EDS), including PWS.

The funds are awarded to non-profit organizations working to address these issues. More than $200,000 has been awarded to innovative patient-centric strategies since the program’s creation in 2019.

ANGEL Aid — a non-profit repurposed in 2018 to be a source for research, relief and inspiration for mothers of children with rare diseases — was the other winner of the 2021 Patients at the Heart award.

Among the evaluated criteria were quality of the application, creativity of the solution, and the non-profit’s infrastructure and past successes.

The company also announced the winners of Progress at the Heart, designed to support innovative programs addressing the “disparities, injustice, and inequities in the rare disease and sleep disorder community,” the company states on its website.

In total, six projects were funded. A complete list of the funded project is available here.

“We are so inspired by the diverse and inventive programs submitted for this year’s Patients and Progress at the Heart programs,” said Cate McCanless, senior vice president, corporate affairs and public policy at Harmony Biosciences.

“Our goal is to improve the lives of people living with sleep disorders and their families, and we hope by supporting these cutting-edge programs, we can make a positive difference for these communities,” she said.

Harmony Biosciences is the developer of pitolisant, an approved medication in the U.S. — sold under the brand name Wakix — to treat EDS or cataplexy (the sudden loss of muscle tone induced by a strong emotion) in adults with narcolepsy, a chronic sleep disorder.

It stimulates the release of histamine throughout the central nervous system — the brain and spinal cord — by its action on histamine H3 receptors.

A Phase 2 trial (NCT04257929), underway across multiple sites in the U.S., is testing the safety and effectiveness of pitolisant as a treatment for EDS in people with PWS. This study is enrolling participants and more information on locations and contacts is available here.