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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.