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 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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Sodium Oxybate to become "routinely" available for narcolepsy with cataplexy (children) in England

4 December 2016

NHS England’s Specialised Services announce they will routinely commission Sodium oxybate for symptom control for narcolepsy with cataplexy (children).

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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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Provigil Supply Update

2 December 2016

We contacted TEVA UK Limited again this week to follow up on progress with rectifying the supply of Provigil® (Modafinil) in the UK.

We received preliminary confirmation that they now expect supply to be resumed as follows.

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NUK attending Swedish Narcolepsy Association conference

18 November 2016

On my way to Stockholm to attend and speak at the annual conference of the Swedish Narcolepsy Association, Narkolepsiföreningen Sverige (NFS) who have funded the trip.

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Fundraising Family Fun Run???

17 November 2016

Several runners offered to take up Narcolepsy UK's place in next year's London Marathon. The Trustees were grateful to everyone who was willing to do that, but there was unfortunately only one place available and after careful – and anonymous - deliberation the Board awarded it to Lewis Jones.

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No evidence for a link between Fluenz Tetra and narcolepsy, says MHRA

17 November 2016

MHRA believes that Fluenz Tetra and other currently-used influenza vaccines are not a cause of narcolepsy.

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