Inaugural World Narcolepsy Day to Take Place on Sept. 22, 2019.
Narcolepsy UK partners with organisations across six continents to create World Narcolepsy Day
Narcolepsy UK is excited to announce that it is coming together with 23 other 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.
“September 2019 will see the culmination of two years work for Narcolepsy UK, producing a Narcolepsy Charter for people living with narcolepsy and their carers across the UK. Based on our findings from a survey of 302 people with narcolepsy and
149 supporters, the Narcolepsy Charter promoted accessibility to early diagnosis, quality treatments and emotional and practical support for people with narcolepsy and their carers.
As well as marking this special day across the UK, we will also be showcasing our research at the biennial World Sleep Congress 2019 forum in Vancouver. World Sleep Congress 2017 saw 2,627 sleep medicine clinicians and researchers attending from 76 countries and we are hugely excited about the opportunity to share our patient and carer based analysis with the rest of the global sleep community." Matt O’Neill, Chair, Narcolepsy UK
World Narcolepsy Day is a powerful new opportunity for the entire community, including patient-advocacy organisations, 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 Sunday, Sept. 22, 2019, patient-advocacy organisations will celebrate with 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.
Dr Tim Quinnell, President of the British Sleep Society said, “Narcolepsy usually first presents itself in children and young adults, at a critical time in their development. Its symptoms persist throughout a person’s lifetime, affecting all aspects of life. Our knowledge of narcolepsy and how to treat it has made huge progress over the past 20 years but it remains a debilitating condition for many people, including for those whose symptoms go undiagnosed. The British Sleep Society wholeheartedly supports this initiative. It is imperative to increase the awareness of narcolepsy. Bringing together patients, carers, clinicians and researchers will help foster a collaborative approach to furthering our understanding of how to diagnose and treat this challenging condition.”
“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:
What can I do?
- Click here for some suggestions of ways to be involved in World Narcolepsy Day 2019.
- Click here for some infographics which can be shared on social media.
- Spread the word about the Narcolepsy Charter and encourage people to sign it via our website to show their support.
About Narcolepsy UK
Narcolepsy UK is a charity registered in England & Wales (No. 1144342) and in Scotland (No. SC043576).
"Narcolepsy UK is a little charity with a big heart and even bigger plans."
Our objectives are to provide relief and aid to those persons suffering from narcolepsy, and our principal activities to achieve these objectives are:
- The promotion and organisation of conferences and exhibitions relating to narcolepsy and its effects.
- The promotion of, and/or assistance in promoting and carrying out: research, surveys and investigations into narcolepsy and its effects.
- Creating the funding strategies that make this work possible.
- Arranging and providing exhibitions, meetings, lectures, classes and training courses.
- Collecting and distributing information via the Narcolepsy UK media portfolio comprising website, Facebook and Twitter, and social media generally.
Our vision is to help provide a world where narcolepsy is understood and people with narcolepsy have the support they need to ensure that their rights are upheld and that they have the same opportunities as others in society.