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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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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Help with travel costs

12 May 2016

Claiming reimbursement of travel costs incurred in attending appointments

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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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London Marathon 2016 – Narcolepsy UK Runners

23 April 2016

Admiration, Awareness and Support – two personal journeys to the London Marathon 2016

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Groups we belong to

19 April 2016

At Narcolepsy UK, we try to connect with many different organisations

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Every penny counts ...

3 April 2016

Update on our "5p and smaller" jar

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NHS public consultation - Please respond before 20th April

25 March 2016

NHS England Specialised Services Clinical Commissioning Policy
Sodium oxybate for symptom control of narcolepsy with cataplexy (children)

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