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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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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European Narcolepsy Day (March 19, 2016) - END Inequality Now

12 February 2016

Saturday 19 March 2016 is European Narcolepsy Day. This year our awareness campaign is to END Inequality Now. This includes - access to medication; reasonable adjustments in education and the workplace; benefits to help not hinder and compensation when it is promised. We have artwork and awareness materials to follow.

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UK study links Pandemrix to narcolepsy in adults

11 February 2016

Risk of Narcolepsy after AS03 Adjuvanted Pandemic A/H1N1 2009 Influenza Vaccine in Adults: A Case-Coverage Study in England.

Please see the attached link to an advance epublication detailing the findings of the above investigation.

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Update on Bristol Pandemrix Compensation Appeal Hearing

1 February 2016

Our chair Matt O'Neill was a witness at a court hearing in Bristol on 26 January 2016 in support of an application to an appeal tribunal for payment under the Vaccine Damage Payment Act 1979. This was in support of a child that developed narcolepsy after receiving the Pandemrix Swine Flu Vaccine. It is important to us all as the main requirement is to define the level of disability associated with narcolepsy and although this case obviously relates to an individual, please share this update to show your support for the family concerned.

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Every penny counts ...

24 January 2016

Just collecting all that unwanted small change can make a difference to Narcolepsy UK

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YouTube channel launched

22 January 2016

Today we are pleased to announce the launch of the Narcolepsy UK YouTube channel.

Over time it will grow, but for now we have 3 videos from our 2015 conference. If you were not able to make it there in person, or if you want a refresh on some of the presentations then check out our new YouTube page by clicking here.

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Availability of Sodium Oxybate - An Update January 2016

11 January 2016

A substantive hearing on an application for Judicial Review of a refusal by NHS England of funding of sodium oxybate for a child is expected to take place in February 2016.

NHS England still does not have a Clinical Commissioning Policy in place for either adults or children.

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30 Walks in 30 Days Challenge

9 December 2015

After all the excesses of Christmas, most of us sit down and make a list of resolutions about how our new year is going to be better than the last. Healthier eating, more exercise, studying that new language we have always said we wanted to learn.  We all want that 'better me'.

Why not kick-start that 'better me' health regime and give to charity at the same time? Joining our 30 Walks in 30 Days Challenge for January 2016 is a great way of getting fit and helping others at the same time.

Our Funding Target

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Narcolepsy UK clothing

20 November 2015

Narcolepsy UK clothing now available