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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Thank you to our conference volunteers

5 October 2016

Narcolepsy UK would like to thank all the volunteers who helped at this year's annual conference.

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VMG London Marathon 2017 - Could you run for us?

5 October 2016

Narcolepsy UK has secured a place in the 2017 VMG London Marathon.

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Medication in schools - new website resource

2 October 2016

A new resource relating to the management of medication in schools.

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Update on Modafinil (Provigil) produced by Teva UK Ltd

30 September 2016

Narcolepsy UK investigate the reported shortage in availability of Modafinil (Provigil®).

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Fantastic Conference Fundraising

19 September 2016

Great fundraising efforts at conference

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Message from Dorothy Hand

15 September 2016

Dorothy Hand, founder of UKAN (the original patient support group from which Narcolepsy UK grew), has told us that she is thrilled that the National Annual Conference is being held here in Manchester this weekend at the Renaissance Hotel.

She reminds us that it was in Manchester in 1981 that the very first meeting was held, so you could say that Narcolepsy UK has 'come home'.

The two days will see Narcolepsy sufferers and supporters gathering to share experiences and listen to knowledgeable experts talk about this often misunderstood and misdiagnosed neurological disorder.

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Pitolisant / Wakix® Update

9 September 2016

We have now received confirmation from the UK Supplier that the Department of Health have now priced Wakix® (Pitolisant) as follows:

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Response to inquest result after death of narcolepsy sufferer

11 August 2016

All Katie ever wanted was to work with children and it was this desire that led to her employer requiring her to have the Pandemrix (H1N1) influenza vaccination in 2009.

One simple life decision led to a domino effect that led to Katie’s death on 23 September 2014. This vaccination, and delays in medical treatment combined with a lack of understanding of the extremely debilitating nature of narcolepsy all contributed to this tragic situation.

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Inquest into death of narcolepsy sufferer concludes

4 August 2016

The inquest into the tragic death of Katie Clack concluded earlier today with the Senior Coroner for South Lincolnshire proposing the delivery of his conclusion, in writing, in Boston, Lincolnshire at 2pm Wednesday, 10 August 2016.

There will be no further comments made by either the family, their legal representatives or Narcolepsy UK until after the conclusion is received.

If you have been affected in any way by the facts publicised about this terrible event, you may find the attached links useful.

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Inquest into death of narcolepsy sufferer

1 August 2016

Many of you will remember our collective sadness when we revealed the tragic news that Katie Clack, a fellow narcolepsy sufferer, had lost her life on 23 September 2014 after falling from the top of Queensgate car park in Peterborough.

This week, a two day inquest into her death will be held by the Senior Coroner for South Lincolnshire and our Chair, Matt O’Neill will be attending on behalf of Narcolepsy UK to provide her family with some support at what will be a very difficult time for them.

Further information can be found via the links below.

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