Project Sleep, a national organization that aims to educate individuals about the importance of sleep health, announced today that it has partnered with 21 organizations around the world to establish World Narcolepsy Day. This ground-breaking day, which will take place on Sunday, Sept. 22, 2019, will be dedicated to raising critical awareness for narcolepsy on a global scale.
Narcolepsy is a chronic neurological condition that impairs the brain’s ability to regulate the sleep-wake cycle. A related condition, idiopathic hypersomnia, is a chronic neurological disorder marked by an insatiable need to sleep that is not eased by a full night’s slumber. Narcolepsy and idiopathic hypersomnia affect over 3 million people worldwide, yet the majority of people living with these conditions are currently undiagnosed or misdiagnosed.
“Public knowledge of narcolepsy and idiopathic hypersomnia is limited and often inaccurate,” said Julie Flygare, J.D., President and CEO of Project Sleep. “Low awareness perpetuates delays in diagnosis while also leading to stigma and isolation. Education is critical to reduce delays in diagnosis, reduce stigma and improve outcomes. I am honored that Project Sleep is a part of this global movement to build a brighter future for all people with narcolepsy and idiopathic hypersomnia.”
World Narcolepsy Day is a powerful new opportunity for the entire community, including patient advocacy organizations, researchers, clinicians, drug developers, local communities and individuals.
“Our scientific understanding of narcolepsy is rapidly advancing and new treatment options are on the horizon,” said Emmanuel Mignot, MD, PhD, Director of the Stanford Center for Sleep Sciences and Medicine. “Thus, this is a critical time to elevate international awareness through World Narcolepsy Day, to help people to receive proper diagnosis and treatment sooner.”
On Sun., Sept. 22, 2019, patient advocacy organizations will lead various activities and efforts to advance awareness, education, support, research, and advocacy. Communities and individuals are encouraged to take part in these initiatives and to raise their voices on social media using the hashtag #WorldNarcolepsyDay.
“Getting involved with patient organizations can provide critical social support for individuals and families facing narcolepsy,” described Yves Dauvilliers, MD, PhD, Professor of Neurology and Physiology at the University of Montpellier, France. “I applaud this international group of organizations for coming together to establish World Narcolepsy Day and I look forward to working alongside them to raise awareness and improve outcomes.”
The worldwide group of organizations establishing World Narcolepsy Day include:
- Asociación de Narcolepsia e Hipersomnias de Argentina
- Asociación Española de Narcolepsia
- Association Française de Narcolepsie-Cataplexie et Hypersomnies Rares
- Associazione Italiana Narcolettici e Ipersonni
- Danish Narcolepsy Association
- FACES of Narcolepsy
- Flemish Federation for Narcolepsy
- Hypersomnia Foundation
- Japan Narcolepsy Association, Naruko-kai
- Narcolepsy Africa Foundation
- Narcolepsy Association Finland
- Narcolepsy Australia
- Narcolepsy Ireland
- Narcolepsy UK
- Nederlandse Vereniging Narcolepsie
- Project Sleep
- Swedish Narcolepsy Association
- Swiss Narcolepsy Association
- SOUND Ireland
- Wake Up Narcolepsy
To learn more about narcolepsy and be the first to know about Project Sleep’s World Narcolepsy Day activities, subscribe for e-updates at project-sleep.com.