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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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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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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Permission Given for a Judicial Review into Sodium Oxybate Funding Refusal

20 November 2015

On Friday 13 November 2015, Narcolepsy UK was at the High Court to support an application for a judicial review of NHS England’s refusal to fund sodium oxybate (brand name Xyrem®) for a child with narcolepsy in England, where this medication was recommended by the treating Consultant.

With the benefit of legal aid, and an exceptionally dedicated legal team (Ian Wise QC, Monckton Chambers, Peter Todd and Freya Colvin, Hodge Jones & Allen Solicitors LLP) permission for a judicial review of NHS England’s refusal to fund sodium oxybate has been given.

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Narcolepsy UK clothing

20 November 2015

Narcolepsy UK clothing now available

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Fundraising pledge

27 September 2015

Following disturbing reports in the press about the way some charities fundraise, this seems an appropriate time to let you know that not only does Narcolepsy UK value all of those generous people who donate to the charity, we also respect your privacy.

We are currently signing up to the new Fundraising Standards Board Code of Conduct, but are confident that we have already met their needs. We want to share with you our pledge that:-

• We do not employ external agencies to collect money on our behalf.

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