Blog: In the media

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Buzzfeed article covering swine flu vaccine and narcolepsy

23 February 2018
Buzzfeed, swine flu, pandemrix, NHS

Featured on Buzzfeed today is a well researched article on the "Pandemrix" swine flu vaccinations of 2009 and the (now) established link to developing narcolepsy. The article focusses on the experiences of NHS staff, who claim they were required or pressured into having the vaccination without being informed of the somewhat unusual circumstances regarding it's rushed roll out and relatively low level of testing. Some of these same staff who were adversely affected by developing narcolepsy symptoms have now been left to cope with what can be devastating life changes without support.

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NHS deny access to Wakix®

14 September 2017
Wakix, xyrem, Pitolisant, sodium oxybate, Lancet, NHS, NETAG, NTAG, Orphan Drug Status

NHS Northern Treatment Advisory Group seeks to deny access to Wakix® in error filled evidence summary.

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Article in PharmaTimes

10 July 2017
PharmaTimes

July/August 2017 issue of PharmaTimes features an article on narcolepsy. Thanks to Trustee, Steve Jones, for approaching PharmaTimes & also the publication for taking an interest in Narcolepsy.

"PharmaTimes is the UK's leading pharmaceutical magazine, tracking the trends and issues that affect the industry here in the UK, in Europe and across the world. We deliver independent, authoritative and trustworthy content through impartial, balanced and informed opinion and analysis.

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Smart narcolepsy cushion earns Year-8 student a place at TeenTech finals

24 June 2017

Year-8 student Nicole Hirst has invented a travel support to be used by people with narcolepsy

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Muddy Trainers - Marathon Update

Steve Jones
24 March 2017
Fundraising, marathon, London

Just over four weeks to go until our family marathon effort in support of Narcolepsy UK

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Houses of Parliament Debate today

8 March 2017
government, parliament

This morning we will be at the Houses of Parliament for a 30 minute debate on Narcolepsy secured by Dinah Forbes via her MP, Tracy Brabin.

We will report back later today but you will be able to follow the meeting live on BBC Parliament.

Following this, we will be joining Di Forbes & Tracy Brabin in a meeting with Nicola Blackwood, Parliamentary Under-Secretary of State for Public Health and Innovation in the Department of Health.

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Houses of Parliament Debate - follow up

8 March 2017
government, parliament, pandemrix, swine flu, vaccine

Narcolepsy UK will be relentless in their pursuit of all of the issues raised in Parliament today. This post summarises the points raised.

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