Blog: Charity updates

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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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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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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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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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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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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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Working to improve NHS sleep services in Wales

16 November 2016

Today we have Matt O’Neill & Nikki Huxley converging on Nevill Hall hospital in Abergavenny, Wales to support Dr Jose Thomas, Consultant in Sleep & Respiratory Medicine in a meeting with the President of the Royal College of Physicians who is visiting the Specialist Sleep and Ventilation Service within the Aneurin Bevan University Health Board, part of NHS Wales.