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 needs YOU - to help set up a local meeting

15 February 2019
meet up, Networking

We are looking for people to help run simple meet up events across the nation. Week commencing 11th March 2019.

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BBC radio Northampton interview

2 February 2019
BBC, Northampton, radio, Heather Korbey

Recently a person with narcolepsy, Heather Korbey, was interviewed on the BBC radio Northampton "Chaz Harrison" programme. We are grateful to Heather for taking the opportunity to help spread awareness of the condition and the reality of the way it affects her life.

The radio show is available to stream until 28th February 2019. Heather speaks about narcolepsy at around the 40 minute mark. It can be found by following this link: https://www.bbc.co.uk/sounds/play/p06wttll

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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
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
staff, benefits, advisor, linda

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
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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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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