Narcolepsy UK is excited to announce that it is coming together with 24 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.
Matt O’Neill, Chair, Narcolepsy UK said, “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.”
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.
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.
You can find more info on World Narcolepsy Day by clicking this link