Blog: Charity updates

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Conference 2017 - The best ever?

11 October 2017

Another successful annual conference for Narcolepsy UK.

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Colchester meeting cancelled

10 October 2017

Our apologies, but the meet up that had been scheduled for 14th October in Colchester has had to be cancelled due to unforeseen circumstances. Keep an eye on the website for future meet ups and other events.

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NHS deny access to Wakix®

14 September 2017

NHS Northern Treatment Advisory Group seeks to deny access to Wakix® in error filled evidence summary.

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Successful conference in Scotland

13 September 2017

On Saturday 9th September 2017 Narcolepsy UK delivered a Conference in Glasgow, kindly funded by Foundation Scotland.

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Narcolepsy UK Annual Conference, 7/8 Oct 2017 (Newbury, Berks) - Charting Our Way Ahead

7 August 2017

Our Annual Conference, 7/8 Oct 2017 - Charting Our way Ahead - links to plans to be released at conference to help bring narcolepsy to the attention of many more sectors of government, medical professionals, the workplace, education, and so on. This is your opportunity to be in at the start of something new and inspiring.

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Big step forward for specialist sleep unit in Wales

25 July 2017

Impending establishment of specialist sleep centre will lead to improved service to narcolepsy patients in Wales.

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In case you missed it ...

26 June 2017

Here's a summary of recent additions to our website

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Is Wakix® the new Xyrem® ?

25 June 2017

Is Wakix® the new Xyrem® ?

I do not ask this because of any similarities between what these two medications can do for people with narcolepsy but for other, far more frustrating reasons. Like Xyrem®, Wakix® has orphan drug status, its effects are not well understood, it is perceived as expensive and NHS adoption is slow because it is relatively new, despite the relevant NICE guidelines.

On May 23rd, 2016, I wrote the following paragraph:

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