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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Walk A Mile In My Shoes challenge update!

5 July 2021
Fundraising, challenge, walk a mile in my shoes

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
cataplexy, videos, youtube, awareness, UCB Pharma Ltd

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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Notice of Temporary Service Delays

15 June 2021

Please be aware that we will be updating some of our backroom systems this week, from 16th June 2021. There may be some temporary service outages and will likely be delays in receiving or responding to communications. We will endeavour to keep disruption to a minimum and hope to be back to full service before the end of the week.

We apologise for any inconvenience this may cause.

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Walk A Mile In My Shoes challenge update!

7 June 2021
Fundraising, challenge, walk a mile in my shoes

We’ve had a great first week of our Walk A Mile In My Shoes challenge. Join us today!

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Interview with Sarah Franklin

13 January 2021
novel, Sarah Franklin, How to Belong, interview

In Sarah Franklin’s latest novel – How to Belong – one of the main characters has narcolepsy and cataplexy. Narcolepsy UK asked Sarah about the book, her motivations for writing about narcolepsy and how she set about researching the condition.

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Position statement on vaccination against COVID-19

10 January 2021
narcolepsy, pandemrix, GSK, vaccination, COVID, Covid-19, autoimmunity

Given the causal link between the deployment of the Pandemrix swine flu vaccination in 2009/10 and the sudden onset of narcolepsy in some individuals, Narcolepsy UK sets out its position with regard to the ongoing vaccination campaign against the SARS-CoV-2 virus.

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Christmas closure

19 December 2020
Christmas, Nicola Rule, Operations Manager

Narcolepsy UK will officially be closed from Tuesday 22nd December 2020 until Tuesday 5th January 2021.

Any messages received during this period will not be seen until we reopen. We are sorry for the inconcenience but as a small team this is unavoidable.

For emergency contact ONLY please call our Operations Manager - Nicola Rule @ 07920 650552

We would like to take this opportunity to wish you all a healthy and happy festive period and hope for good things in 2021.

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Important information about Modafinil and pregnancy

17 November 2020
modafinil, provigil, pregnancy, warning, drug, yellow card, contraception

The Medicines and Healthcare products Regulatory Agency have issued a drug safety update regarding the use of Modafinil during pregnancy:

"Modafinil potentially increases the risk of congenital malformations when used in pregnancy. Modafinil should not be used during pregnancy and women of childbearing potential must use effective contraception during treatment and for 2 months after stopping modafinil."

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Adapting to support during the pandemic

26 October 2020

Narcolepsy UK - Adapting network meetings during the coronavirus pandemic

Narcolepsy UK has been running volunteer coordinated network meetings all over the UK successfully for many years. Due to the government's current restrictions on group gatherings we have been unable to run our meetings as normal. We have had to adapt so that we can continue to provide support that network meetings provide.

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