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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Narcolepsy UK Charter adds our collective voice to enable new nationally recommended treatment for excessive daytime sleepiness in adults with narcolepsy with or without cataplexy in England and Wales.

18 November 2021

Narcolepsy UK Charter adds our collective voice to enable new nationally recommended treatment for excessive daytime sleepiness in adults with narcolepsy with or without cataplexy in England and Wales.

National Institute for Health and Care Excellence (NICE) has recommended solriamfetol as an option for treating excessive daytime sleepiness in adults with narcolepsy if modafinil and either dexamfetamine or methylphenidate have not worked well enough or are not suitable.
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Virgin Money Giving (VMG) will cease to operate from 30/11/21

9 November 2021

We would like to make all our supporters aware that given the significant investment required in the service for it to remain competitive, and without the brand exposure provided by the London Marathon, Virgin Money decided to wind down the Virgin Money Giving (VMG) platform after the 2021 London Marathon in October and it will cease operating on 30 November 2021.

Narcolepsy UK have decided to consolidate their donation & fundraising activity with Give as You Live (GAYL) and we will be updating our internet and social media pages with new reference material for you.

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If you are considering applying for benefits

28 October 2021

HELP & SUPPORT provided by Narcolepsy UK is FREE. This includes support with benefits applications.

However, we have a much better success rate when an application for DLA/PIP/etc is aided by our Benefits Advisor right from the start - to help ensure you accurately give real emphasis to what you cannot do.

So if you have Narcolepsy or Idiopathic Hypersomnia and are considering making a Benefits Application, do FIRST email info@narcolepsy.org.uk

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Volunteer post: Fire & Rescue Services Liaison

12 October 2021

UPDATE 18 Nov 2021 - this post has now been filled so we no longer require applications. Thank you for the responses.

Narcolepsy UK has formed a working relationship with Fire & Rescue Services.

We are looking for a volunteer to arrange home safety visits from the Fire & Rescue Service for our clients on request.

Tasks would include

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Volunteers needed – how should we measure sleepiness in children?

10 October 2021

The Southampton children’s sleep clinic invites volunteers to improve the way that the medical profession measures sleepiness in children.

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World Narcolepsy Day 2021 - #SleepOnIt campaign

6 September 2021

This year we are asking for everyone to bring it to Instagram. As we build up to World Narcolepsy Day, show the world that narcolepsy impacts people everywhere! Participate in our Instagram social media campaign using the hashtags
#SleepOnIt   #WorldNarcolepsyDay

Don’t forget to tag us as well: @narcolepsyuk

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Idiopathic Hypersomnia Awareness Week

6 September 2021

This week is Idiopathic Hypersomnia Awareness Week. As there are many similarities between idiopathic hypersomnia (IH) and narcolepsy, notably the impact that both these sleep disorders have on education, work and relationships, Narcolepsy UK exists to raise awareness and support all those in the UK with a diagnosis of IH too.

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South Coast Challenge for Narcolepsy UK

16 July 2021

In September, four friends - Jo Collins, Robin Collins, Jan Howard and Lee Fishwick - will be taking on the South Coast Challenge to raise awareness and funds for Narcolepsy UK. The “Fab Four” will walk from Eastborne to Arundel, a distance of around 100km (~63 miles) over the course of just two days.

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Walk A Mile In My Shoes challenge update!

5 July 2021

Narcolepsy UK would like to thank Katie, Mandy and Laura for taking part in our Walk a Mile in My Shoes fundraising campaign. They have been enjoying doing this so much that they have shared some photos of their walks.

Find out more about the campaign by following the link below:

https://donate.giveasyoulive.com/campaign/walk-a-mile-in-my-shoes

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Awareness video - Don't Make Me Laugh

19 June 2021

I’m back!

Last time I appeared it was in Aintree & across the wider Liverpool area but this time, I’m going UK-wide or maybe even global!

Please help me to raise awareness by sharing my films, giving me a like and sending me to people who you know would like to understand more about narcolepsy.

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