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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Houses of Parliament Debate - follow up

8 March 2017

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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Houses of Parliament Debate today

8 March 2017

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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Narcolepsy UK visits DVLA

3 March 2017

On 8 February 2017 Narcolepsy UK attended a meeting at the DVLA in Swansea.

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Narcolepsy UK Posters

2 March 2017

We have created a range of new poster designs, which are now available from our website to be printed for display wherever you might want to help spread the word and raise awareness.

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Updates from Narcolepsy UK

24 February 2017

Recent news on the UK Supreme Court ruling, European Commission views on the Pandemrix issue, and the ex gratia scheme for provision of Xyrem to Pandemrix personal injury claimants.

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In the News: Real Life Sleeping Beauty

27 January 2017

A positive news story highlighting the case of Annabelle Hutt, a young lady of 21 who has narcolepsy with cataplexy.

Click here for the full story

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Sleep disorder sufferers await ruling over role of swine flu jab

24 January 2017

On behalf of Narcolepsy UK, I have contributed personally to evidence for all three of the cases quoted here, know the families concerned and been through some of the sad events that have transpired and are mentioned in this article. I will, yet again, be in the court this week to hear on what tenuous basis the DWP think they can appeal a decision that they have already been overturned on twice. The Vaccine Damage Payment Act of 1979, as the government have always been quick to point out, is not a compensation scheme and I agree with them on that point.

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