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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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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Narcolepsy UK represented in the Neurological Alliance

21 December 2016

At our last annual conference in Manchester, we told you that the board of Narcolepsy UK had supported an application by our chair, Matt O’Neill, to join the board of the Neurological Alliance.

We are delighted to let you know that his application was successful and he was elected to the board of the Neurological Alliance at their recent AGM in November with the final formalities being completed today.

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Helpline service – reduced availability

9 December 2016

Helpline service suspended for benefits queries.

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Narcolepsy sufferers face uphill struggle in Wales

7 December 2016

The lack of a treatment centre in Wales for people suffering from narcolepsy is causing problems for people with the condition.

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European health commissioner to face calls for EU-wide inquiry into aftermath of swine flu vaccine

4 December 2016

The Pandemrix Narcolepsy European Alliance will tell the European Commissioner for Health and Food Safety next week that he needs to launch a pan-EU public inquiry into the cases of narcolepsy that were triggered by use of the Pandemrix vaccine to treat the 2009/10 swine flu outbreak.

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