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 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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Charter Questionnaire is now closed

3 August 2018

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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Narcolepsy Charter – Consultation goes live!

28 June 2018

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.

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We want to see your art!

20 June 2018

We are pleased to announce that Narcolepsy UK are planning the return of hosting an exhibition of art and other creative endeavors at our annual UK conference. The conference is in September (see link at bottom of this post for more details), and we would love to display work from people with narcolepsy. For those in the UK (or planning to visit), we would also very much like to meet you so would encourage you come along!

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Data Protection - Our commitment to GDPR

16 June 2018

All organisations that process personal data now have to comply with the requirements of the GDPR, and at Narcolepsy UK we are committed to doing so.

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