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 Groups available

15 April 2020
support group, Liam

Narcolepsy UK volunteers have helped over 25 people in just the last few weeks through our Online Support Group Meetings.

If you want to get involved contact liam.sloan@narcolepsy.org.uk

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Online support group chats - 7th-10th April 2020

7 April 2020
support group, Liam, volunteers

Narcolepsy UK are offering Online Support Group Chats for PWN.

This weeks Online Support Groups are at -

  • Tuesday 07/04/2020 @ 5:00 pm - Video Chat with Adele 
  • Wed 08/04/2020 @ 7:00 pm - Video Chat with Kerly 
  • Thursday 09/04/2020 @ 5:00 pm - Video Chat with Adele 
  • Friday 10/04/2020 @ 2:00 pm - Video Chat with Kerly

If you are interested in taking part please email liam.sloan@narcolepsy.org.uk

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Online support group chats - 3rd April 2020

3 April 2020
support group, Liam, volunteers

FEELING ISOLATED? LONELY? NEED TO TALK?

Narcolepsy UK are offering Online Support Group Chats today for PWN.

They will take place at the times below with our trusted volunteers-

  • 2:00 pm with Heather
  • 5:00 pm with Adele

If you would like to join in please email liam.sloan@narcolepsy.org.uk, including the time of the meeting you would like to join and we will add you to the group.

Limited spaces.

Chats will take place via Messenger or Zoom.

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Online Support Meetings

25 March 2020
support group, coronavirus, Covid-19

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
coronavirus, Covid-19, Guy Leschziner

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, coronavirus, Covid-19, charter

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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Support a student with narcolepsy

10 March 2020
student, EPQ, questionnaire

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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Update on meet ups

10 March 2020
coronavirus, Covid-19, meet up

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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Trustee Update 2020

6 February 2020
trustee

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
xyrem, yellow card, UCB cares

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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