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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Online Support Meetings

25 March 2020

Hello everyone, here at Narcolepsy UK we think it is important to support each other in these very difficult times, so we are doing Online Support Meetings to help people with narcolepsy and their families/carers. If you want to chat to other people with narcolepsy or maybe you are feeling lonely, get in touch with me - Liam Sloan, Volunteer Coordinator at Narcolepsy UK and we will schedule you into one of the group chats, 4 per group. Alternatively you can also have a one on one with one of our staff/volunteers if needed.

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Narcolepsy does NOT mean higher risk of coronavirus

19 March 2020

In the current climate, everyone is extremely concerned about the effects of Covid-19 on their own and their family’s health. A number of conditions are associated with elevated risk of significant complications of the infection, including individuals whose immune systems are suppressed through disease or medication. 

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World Sleep Day® and coronavirus

13 March 2020

World Sleep Day® is Friday March 13, 2020 and will incorporate the slogan, 'Better Sleep, Better Life, Better Planet.'

Traditionally, Narcolepsy UK have marked mid-March as an important date in our calendar for raising awareness. Historically, this has broadly aligned with the Spring Equinox / European Narcolepsy Day & similar events run in the USA such as Sleep Awareness Week & Suddenly Sleepy Saturday.

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Update on meet ups

10 March 2020

You may have noticed that the event postings for the meet ups in Bristol and Northampton that were scheduled for this coming weekend have been removed.

Due to the rapidly changing conditions and public health advice regarding the coronavirus Covid-19, we have taken the decision that it is not in the public interest for us to promote such get together events at this time.

Obviously we hope the situation improves rapidly, and we look forward to future events.

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Support a student with narcolepsy

10 March 2020

Can you support a fellow person with narcolepsy in their studies?

We have been approached by a Year 12 student, with narcolepsy, who has decided to focus their Extended Project Qualification (EPQ) on evaluating the effectiveness of treatment for Type 1 narcolepsy (narcolepsy with cataplexy).

All results will be anonymous so please spare some time to answer this brief questionnaire and provide data for their very worthwhile project.

https://www.surveymonkey.co.uk/r/YN6HY9L

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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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