We are attending our first World Sleep event and have sent Matt to showcase your #NUKCharter (Narcolepsy UK have a booth in the main exhibition hall 23rd-25th September) and take part in an official event on Sunday, September 22nd, to mark the inaugural #WorldNarcolepsyDay to which he has dedicated a huge amount of personal effort in helping to make happen along with Julie Flygare of Project Sleep and other participating groups from around the world.
Aimed at tackling the challenges and discrimination faced by the narcolepsy community across the UK, the Narcolepsy Charter will be a written statement of the rights of people with narcolepsy and their carers. It will set out the basic rights that people with narcolepsy and their carers deserve and should expect.
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.
We believe that people with narcolepsy and their families and friends have the same rights to a full and rounded life as any other person without having to make this happen. The Charter is a written statement of these rights based on responses to an online survey of 302 people with narcolepsy and 149 supporters undertaken by Adelphi Research. The survey was made possible with support from Adelphi Research, Lincoln Medical Limited, The National Lottery Community Fund and UCB Pharma.
We are now into the final few days before our annual conference in Manchester and are making great progress in pulling together the key themes & focus areas from our recent survey. We hope you all booked your tickets to hear and see the results first-hand as we prepare to translate these into our Narcolepsy Charter.
All of us here at Narcolepsy UK would like to say thank you for the massive response you provided to our charter questionnaire. We are already busily reviewing the content to present to you at the annual conference in Manchester 8th-9th September.
Looking forward to seeing as many of you there as possible.
One of our most important projects for 2018 is the development of the Narcolepsy Charter.
Aimed at tackling the challenges and discrimination faced by the narcolepsy community across the UK, the Charter will be a written statement of the rights of people with narcolepsy and their carers. It will set out the basic rights that people with narcolepsy and their carers deserve and should expect.