Blog: Charity updates

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In case you missed it ...

26 June 2017

Here's a summary of recent additions to our website

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Is Wakix® the new Xyrem® ?

25 June 2017

Is Wakix® the new Xyrem® ?

I do not ask this because of any similarities between what these two medications can do for people with narcolepsy but for other, far more frustrating reasons. Like Xyrem®, Wakix® has orphan drug status, its effects are not well understood, it is perceived as expensive and NHS adoption is slow because it is relatively new, despite the relevant NICE guidelines.

On May 23rd, 2016, I wrote the following paragraph:

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Juan reaches Land's End

6 June 2017

Juan makes it to Land's End

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London to Brighton - Another great effort!

5 June 2017

Our thanks to Louise, another one of our gallant band of fundraisers, who has walked from London to Brighton in support of Narcolepsy UK.

That's 21 hours of walking over 2 days! Louise tells us it was one of the hardest physical endurance events she has ever done, but worth every penny in view of the sponsorship of around £750 she has raised.

Well done, Louise, and thank you from all at Narcolepsy UK!

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Volunteers Week 2017

1 June 2017

1-7 June 2017 is National Volunteers Week. Narcolepsy UK would like thank all of our volunteers for contributing their free time to help support the charity. Our volunteer community continues to grow stronger each year.

Some of the things we have our volunteers to thank for are network meeting support groups, raising public awareness and fundraising for the charity.


Liam Sloan, Volunteer Coordinator

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Hitchhiking with narcolepsy

2 May 2017

Juan Nuevo is to hitchhike from Bristol to John O’Groats, down to Lands End and back to South Gloucestershire in just ten days

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Marathon Fundraising Update

1 May 2017

Marathon fundraising effort for Narcolepsy UK on 23 April 2017

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Success in Devon!

27 April 2017

Last Tuesday, 18th April 2017 Matt O’Neill and Peter Todd completed an overnight “dash” to Devon where they joined a patient on Wednesday morning to present at a “Treatment Decision Review (TDR) Panel” in an attempt to reverse a decision by an “Individual Funding Request” (IFR) Panel to refuse funding for treatment with sodium oxybate for an adult with severe narcolepsy.