Narcolepsy UK partners with organisations across six continents to create inaugural World Narcolepsy Day on September 22nd, 2019
Narcolepsy UK is excited to announce that it is coming together with 24 organisations 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.”
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.