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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Neurological Patient Experience survey (England)

20 December 2018
NA, neurological, Neurological Alliance, survey, patient experience, England

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, AIN, EU, Italy, ISNB, University of Bologna, Mignot, Emmanuel Mignot, Claudio Bassetti, Icillio Ceretelli

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
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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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British Medical Journal article on Pandemrix vaccine

21 September 2018
BMJ, British Medical Journal, Ireland, pandemrix, vaccine

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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Narcolepsy UK Conference 2018 presentation films now online

21 September 2018
conference, youtube, videos, films, clips, speakers, presentations, art, exhibition, creative

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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Radio interview with Sleepyhead author Henry Nicholls

19 September 2018
Sleepyhead, Henry Nicholls, radio, interview

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
conference, Manchester, survey, charter, familial, Rosa Peraita-Adrados, Royal Society of Medicine, medicine & me

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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Charter Questionnaire is now closed

3 August 2018
charter, survey, questionnaire

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.

Link to conference booking - https://www.narcolepsy.org.uk/civicrm/event/info?reset=1&id=89

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Problem with the "Join Us" form.

1 August 2018

We are aware there is an apparent issue with the "Join Us" membership registration webform on our website. The form displays an error message after it is submitted, appearing to have not saved.

Please be assured that despite the error message, we are actually receiving the form data and it is being saved correctly.

The issue causing the error display is being worked on and will hopefully be resolved shortly. We are sorry for any inconvenience this may have caused any of our site visitors.

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