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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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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Help with travel costs

12 May 2016

Claiming reimbursement of travel costs incurred in attending appointments

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Conference 2016 is coming!

12 May 2016

Tickets are selling fast for our 2016 Annual Conference

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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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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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Judge overturns 'absurd' NHS decision not to treat narcoleptic 17-year-old

6 May 2016

The judge in the case criticised the organisation for a "thoroughly bad decision" and "absurd" policy. Mr Justice Collins said he would issue a mandatory order against NHS England after deciding it had acted unlawfully. He said the only proper course of action based on the facts was to order that the drug be provided.

Click here for story (Telegraph)

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Success at The Royal Courts of Justice

4 May 2016

Today, it's back to The Royal Courts of Justice, with an application for judicial review of a decision by NHS England to refuse funding for medication.

Click here for more info

UPDATE - Success! Mr Justice Collins to make a rare mandatory order requiring NHS England to fund sodium-oxybate for the child concerned.

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