Blog

Keep up to date with all the latest news from the world of narcolepsy, and some of the things we are doing to help.

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Change of sleep specialist in Oxford

15 September 2019

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.

More information on UK sleep centres can be found by clicking this link

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World Narcolepsy Day

26 August 2019

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.

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Idiopathic Hypersomnia

12 August 2019

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.

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Narcolepsy Charter launches

12 August 2019

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.

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Narcolepsy UK supporting Irish Pandemrix® victims

26 July 2019

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.

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Call for national neurology plan following largest ever survey

10 July 2019

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.

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Building partnerships to raise awareness

16 June 2019

Narcolepsy UK has collaborated with UCB and Aintree University Hospital on a pilot programme to raise awareness

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Narcolepsy UK attend Narcolepsy Advisory Board in Zurich

18 May 2019

In Zurich this week, Matt O'Neill took part in a Narcolepsy Advisory Board to enhance understanding of narcolepsy from the patient perspective.

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Template GP letter added to Resources

17 May 2019

Sometimes you may need a doctor's letter as evidence of your diagnosis of narcolepsy, for instance to support an application for benefits.

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Speaking today at the Royal Society of Medicine

10 May 2019

Narcolepsy UK represented at the Royal Society of Medicine event "Narcolepsy & Other Central Hypersomnias - Current and Future Trends".

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