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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Narcolepsy medications: new website resources

24 January 2019

We are pleased to announce that we have added to the information available on our website regarding medications used in the treatment of narcolepsy.

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Neurological Patient Experience survey (England)

20 December 2018

In 2016 the Neurological Alliance ran a patient experience survey, gathering over 7000 responses, from patients with neurological conditions living in England (see previous blog post). The findings were used to campaign for better services and support for people with neurological conditions.

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Italian Narcolepsy Association (AIN), annual multidisciplinary seminar

15 December 2018

Italian Narcolepsy Association (AIN)

A very important aspect of our work is collaboration & engagement with other patient associations across the world and this weekend our Chair & Operations Manager are with other members of the EU Narcolepsy Association in Bologna, Italy for one of their regular annual meetings.

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New Helpline and Benefits Advisor

17 November 2018

We are pleased to introduce to you Linda Reynolds who has joined us as Helpline and Benefits Advisor.

Linda is married with one adult daughter and with a close relative who has narcolepsy and cataplexy. She has a rather eclectic work history ranging from lecturing to making designer wear, managing manufacturing departments and shops and ending as a civil servant working on Tax Credits and latterly Universal Credit.

We look forward to working with Linda to offer support and in particular help with benefits to the UK narcolepsy community.

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Narcolepsy UK Conference 2018 presentation films now online

21 September 2018

During the recent Narcolepsy UK 2018 Conference in Manchester, we were able to livestream some of the speakers on social media. This was great for keeping people not able to travel to be with us engaged with activities, but was not able to offer the full experience. In particular, slides were not visible and sound levels were very low due to the limitations of the equipment used.

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British Medical Journal article on Pandemrix vaccine

21 September 2018

Publishing this link to today’s British Medical Journal article on the use of the Pandemrix vaccine.

Have to question where the BMJ have been for the last 9 years and why they have chosen to focus on events in the Republic of Ireland.

That story needs telling but so do they all. Perhaps it felt a bit too difficult to publicise here when we needed support.

Numbers quoted from our website are historic & we were not contacted to re-validate ahead of this article being published.

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Radio interview with Sleepyhead author Henry Nicholls

19 September 2018

Narcolepsy UK trustee and science writer Henry Nicholls recently published a book, "Sleepyhead: Narcolepsy, Neuroscience and the Search for a Good Night". In relation to this he was interviewed, with 45 minutes of air time, talking about narcolepsy, cataplexy and sleep disorders on Jefferson Public Radio in the US yesterday morning. The full interview is here.

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Narcolepsy UK Conference: just days to go!

3 September 2018

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.

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