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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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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Narcolepsy UK welcomes second neurological patient experience survey

7 July 2016

The Neurological Alliance has launched its second neurological patient experience survey. The survey aims to collect vital information about the experiences of care received by people affected by neurological conditions and help us to understand how much progress has been made in improving neurological services.

The survey is open until 30 September 2016 and the Alliance welcomes responses from anyone with a neurological condition living in England.

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Animated short released

29 June 2016

An animated short was kindly shared with us recently, and we are pleased to be able to show it to you here.

From the creator:
"The film is about my younger sister, Honor. She is from Harrogate, North Yorkshire. She is 18 and just finished her a-levels. She developed narcolepsy when she was 13. 

My name is Melissa. I have just graduated from the BA Graphic Design course at Camberwell College of Arts in London. I made the short film for my final project, with the aim of raising awareness of Narcolepsy. 

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High Court judgement about Sodium Oxybate made public

16 June 2016

The judgment of the High Court in the judicial review about NHS England's refusal to fund sodium oxybate for a child was handed down on 15th June. It is now in the public domain and here is a link to it for anyone interested. www.bailii.org/ew/cases/EWHC/Admin/2016/1395.html

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Want to display some art? We can help.

15 June 2016

Narcolepsy UK are planning to host an exhibition of art and other creative endeavors at the annual UK conference.

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