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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Trustee Update 2020

6 February 2020

On behalf of the board of trustees and everyone at Narcolepsy UK, we’d like to welcome Amanda Molloy to the board and say a fond farewell to Steve Jones and Hugh Davies-Webb who stepped down in 2019. Matt O’Neill will continue as Chair & has now stood down from the board of the Neurological Alliance England to allow him to focus more on his core activities for Narcolepsy UK, raising awareness and fundraising, particularly in the corporate world.

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Xyrem - Urgent Yellow Card Request

5 February 2020

Recently we have been seeing ongoing issues with the seals of Xyrem bottles and also the quality of the inserts. 

This has been reported to UCB Pharma and they are investigating but after discussion with them, we have agreed that we should encourage anyone affected by this to use either the MHRA Yellow Card system and/or the UCB Cares telephone line to report their concerns.

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Narcolepsy on "The One Show" (23rd Jan 2020)

23 January 2020

"The One Show"

Tonight (Thursday 23rd January)

BBC 1 @ 7pm

Our Chair, Matt O'Neill, will be live on the show talking about Narcolepsy with Dr Zoe Williams

We very much thank the young ladies also appearing.

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Interested in a London meet up in Feb/March?

8 January 2020

Shola Ariyo is looking at host a London area meet up in either late February or early March. She has asked if anybody interested could "like" the post she put on Facebook (on Jan 3rd) about it so she has an idea of numbers and can communicate with people to organise the event.

Click here to go to Shola's Facebook page

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Christmas break

6 December 2019

20 December 2019 - 03 January 2020.

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Christmas shopping

28 November 2019

So many times this year, I have been asked what we (Narcolepsy UK) do and I have responded with:

We try to do whatever it takes to provide the support that people need, where they need it.

It could be education, employment, home, family, social life or access to benefits, medicine and treatment options. It may be simple or complex, we will still help.

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Nominate Narcolepsy UK for 12 Days of Giving

23 November 2019

Your nomination really counts. £1,000 could make a real difference to the work we do supporting all people in the UK impacted by narcolepsy (or idiopathic hypersomnia). Your nomination could be the one that helps us win. £1,000 is a significant figure for a charity of our size, and would help us keep our free support helpline active.

Click ‘nominate now’ on the website and enter our details (the charity number for Narcolepsy UK is 1144342). Thanks for your support!

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World Sleep 2019 - Vancouver

21 September 2019

We are attending our first World Sleep event and have sent Matt to showcase your #NUKCharter (Narcolepsy UK have a booth in the main exhibition hall 23rd-25th September) and take part in an official event on Sunday, September 22nd, to mark the inaugural #WorldNarcolepsyDay to which he has dedicated a huge amount of personal effort in helping to make happen along with Julie Flygare of Project Sleep and other participating groups from around the world.

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Change of sleep specialist in Oxford

15 September 2019

Of note to anybody in the Oxford area, we have been informed that the sleep specialist Dr Ziawalla (working from John Radcliffe Hospital) has retired.

John Radcliffe Hospital said that they now have two sleep consultants; Dr Mkael Symmonds and Dr Graham Lennex. The sleep consultant specialist in Narcolepsy is Dr Mkael Symmonds.

More information on UK sleep centres can be found by clicking this link

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