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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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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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.

www.ncbi.nlm.nih.gov/pubmed/26856903

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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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