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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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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Success for Jacky!

23 March 2016

Working with Peter Todd & his team at HJA, we have been successful in obtaining a 3 month trial of Sodium Oxybate for Jacky Lloyd. This will be followed by a review of its clinical efficiency and a final decision made as to funding. So, today we celebrate with Jacky & her family!

Narcolepsy UK will continue to lobby for access to medicines for all PWN in the UK.

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New research into potential "orexin" medication

22 March 2016

Reset Therapeutics, Inc., announced a collaboration with an affiliate of Alkermes plc for the discovery, development and commercialization of novel orexin receptor modulators from Reset’s drug discovery platform. The orexin system is a key modulator of wakefulness, appetite and mood, and its dysregulation is associated with central nervous system (CNS) disorders such as narcolepsy and depression.

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Welcome to our new look website

17 March 2016

A few years ago we launched an expanded website with the ambition to bring together narcolepsy information to help all those affected. This was a big step forward, but was by no means perfect. We gathered feedback and thoughts, and for some time now we have been working hard to revamp the site to offer better access and information. What you are now seeing is the results of that work.

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