So many times this year, I have been asked what we (Narcolepsy UK) do and I have responded with:
We try to do whatever it takes to provide the support that people need, where they need it.
It could be education, employment, home, family, social life or access to benefits, medicine and treatment options. It may be simple or complex, we will still help.
Your nomination really counts. £1,000 could make a real difference to the work we do supporting all people in the UK impacted by narcolepsy (or idiopathic hypersomnia). Your nomination could be the one that helps us win. £1,000 is a significant figure for a charity of our size, and would help us keep our free support helpline active.
Click ‘nominate now’ on the website and enter our details (the charity number for Narcolepsy UK is 1144342). Thanks for your support!
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.
Of note to anybody in the Oxford area, we have been informed that the sleep specialist Dr Ziawalla (working from John Radcliffe Hospital) has retired.
John Radcliffe Hospital said that they now have two sleep consultants; Dr Mkael Symmonds and Dr Graham Lennex. The sleep consultant specialist in Narcolepsy is Dr Mkael Symmonds.
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 are pleased to confirm that IH (Idiopathic Hypersomnia) patients are welcome to register with our charity and to use the services we offer in the hope this will make life easier for you. You will be treated equally with our current client base and are welcome to join us at Conference where Dr Biswajit Chakrabarti will take the podium to speak on this topic.
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.
Following an approach by the Irish litigation law firm, Michael Boylan, acting for c.80 adults & children affected by Narcolepsy arising from the administration of the Swine Flu vaccine Pandemrix® between October 2009 and the end of March 2010, our Chair Matt O’Neill will be supporting them in their pursuit of recognition of damages caused and their claim for compensation. Pandemrix® was manufactured by GlaxoSmithKline.
People with neurological conditions are facing long waiting times, poor access to specialists and a lack of personalised care. That’s according to a new report published by The Neurological Alliance. The survey was the largest ever survey of people with neurological conditions in England with 10,339 responses. It also found failings in the social care and welfare system, as well as discrimination in the workplace for people with neurological conditions.
