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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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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USA - Feds Probe Drugmaker-Charity Connections

3 June 2016

Narcolepsy UK receives no funding from pharmaceutical companies and in the event that we were approached, we have a very transparent and strict criteria that must be adhered to.

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New Narcolepsy UK T-shirt Design

30 May 2016

Envisaged to speak directly about the experience of having narcolepsy, this new design is available now.

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Pitolisant / Wakix® Update

23 May 2016

I thought it would be useful to provide you all with an update on where progress with patient access has reached for the new, first-in- class, medicine known as Wakix® or Pitolisant. This oral medicine acts on histamine H3 receptors in the brain, leading to the release of increased histamine, thereby enhancing wakefulness and alertness.

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Get involved! Narcolepsy UK Summer Walkathon

12 May 2016

We are inviting our supporters up and down the country to get out into the fresh air and join us on a sponsored Summer Walkathon.

Make the most of the long daylight hours around the summer solstice with a sponsored walk in your local area on Sunday 19 June 2016. It does not matter whether you walk round your local park, up a mountain or down into town. You can walk on your own, with your spouse and children, with your friends, with the dog or even with the cat!

For more information see here.

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Research project about children with narcolepsy needs volunteers

12 May 2016

The Paediatric Narcolepsy Project research programme is investigating school performance and well-being in children with narcolepsy aged 8-16 years old. The project has been set up by The University of Leeds and has received ethical approval from the School of Psychology's Research Ethics Committee (ref: 15-0198, date: 03.08.15). The research is taking place in the United Kingdom and in the Republic of Ireland. They are still looking for families across the UK and Republic of Ireland to take part in this research.

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Conference 2016 is coming!

12 May 2016

Tickets are selling fast for our 2016 Annual Conference

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