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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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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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.

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NHS England AGM 2016 - video recording

12 November 2016

NHS England’s Annual General Meeting (AGM) took place on 25 October 2016 at the Royal College of Obstetricians and Gynaecologists, London. Narcolepsy UK were invited to attend, and our chair was able to ask a question from the floor during the Q&A section.

NHS England have now published online the recordings of the AGM.

Click here to visit the NHS England page for the AGM recordings

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NHS England AGM 2016

30 October 2016

As mentioned earlier this week, our Chair, Matt O’Neill, attended the NHS England AGM 2016 and as well as having submitted a question online also managed to raise a direct question to the Q&A panel at the end of the meeting.

The question was referred by Simon Stevens, Chief Executive, NHS England to Professor Sir Bruce Keogh, National Medical Director, NHS England who was unable to respond within the constraints of the meeting and it was agreed in a subsequent discussion that we would arrange a future meeting with Sir Bruce Keogh to discuss.

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Safe Swimming project - We need your vote!

21 October 2016

The Aviva Community Fund offers the chance for community projects to win funding. Narcolepsy UK are applying for funding for our Safe Swimming project. Successful applications are based on public voting, so your vote can make the difference!

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