Harmony Biosciences Hosts Summit Which Sheds Light on Impact of Sleep Disruption in Rare Diseases
In many therapeutic areas, treatment is a balance of – or decision between – managing symptoms, including those not as well known or manifested, and addressing the underlying cause of the disease. Often in rare diseases, one such "hidden" symptom is EDS. The goals of the summit were to describe the physical, emotional, social and cognitive challenges faced by patients with EDS; the challenges they face in having this symptom diagnosed; and its overall impact and burden on daily functioning.
"On the occasion of World Sleep Day 2021, we want to help raise awareness of how excessive sleepiness is prevalent across the spectrum of rare disease," said
Participants in the summit discovered common issues related to sleep disruption across different disease states that had not previously been recognized. These issues include behavioral challenges, reduced social and cognitive abilities, increased comorbidities, increased anxiety and depression, and an overall reduced health-related quality of life. The summit also highlighted challenges in sleep measurement data collection in special needs populations and a difficulty with diagnosis and treatment in comparison with symptoms more commonly associated or accepted as a part of their respective rare disease.
The white paper can be accessed by clicking here.
Summit participants included:
Terri Jo Bichell, PhD, MPH, Executive Director, COMBINEDBrain Casey Gorman, Executive Director, Parents and Researchers Interested in Smith-Magenis Syndrome Lindsay Jesteadt, PhD, Director of Development, Wake Up Narcolepsy Jeremy Kelly, Board Chair & Lifetime Trustee, Myotonic Dystrophy Foundation Erica Kelly, person with myotonic dystrophy Rebecca King, Board Member, Hypersomnia Foundation Steve Maier, President, KLS Foundation Board of Directors Sharon O'Shaughnessy, Vice President, Board of Directors, Narcolepsy Network Lara Pullen, PhD, President and Co-Founder, Chion Foundation Paige Rivard, Chief Executive Officer, Prader-Willi Syndrome Association USA Theresa Strong, PhD, Director of Research Programs, Foundation for Prader-Willi Research
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