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 Charter - survey being developed

9 March 2018
charter, survey, questionnaire

This weekend, as part of the preparation work for the Narcolepsy Charter project introduced at the last Narcolepsy UK conference, we will be distributing a short-form pilot version of a survey at the arranged meet-ups to help us understand all the needs and factors affecting the lives of people with narcolepsy in the UK. Once we have processed the feedback we will then progress to an expanded online survey and hope to have as many people as possible engage with it.

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London meeting date update

8 March 2018
Dream Talking Weekend, meet up, London, Networking

This weekend there is a London meet up arranged as part of the awareness-raising "Dream Talking Weekend". It was incorrectly listed as Saturday 10th March.

Please note the correct date and time for this is: Sunday 11th March 2018 from 3pm - 5pm. The venue is Prezzo, 35a Kensington High Street, London W8 5BA.

Our apologies for the error in the original listing.

Click here for meeting details

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Buzzfeed article covering swine flu vaccine and narcolepsy

23 February 2018
Buzzfeed, swine flu, pandemrix, NHS

Featured on Buzzfeed today is a well researched article on the "Pandemrix" swine flu vaccinations of 2009 and the (now) established link to developing narcolepsy. The article focusses on the experiences of NHS staff, who claim they were required or pressured into having the vaccination without being informed of the somewhat unusual circumstances regarding it's rushed roll out and relatively low level of testing. Some of these same staff who were adversely affected by developing narcolepsy symptoms have now been left to cope with what can be devastating life changes without support.

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Website 'Search' function added

23 January 2018
search, website

We have added the ability to perform keyword based searches for website content.

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Are you in Lincolnshire? Can you help?

11 January 2018

Do you live in Lincolnshire? Could you help shape the future provision of medical care for neurological conditions like narcolepsy in your area?

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30 Walks in 30 Days - Raise Money for Narcolepsy UK

11 January 2018

2018 sees the third year of our “30 walks in 30 days” fundraising campaign.

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To our staff and volunteers: Thank you!

19 December 2017

Thanks to all the charity's staff and volunteers for their hard work in 2017

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Benefits helpline temporarily not available

8 December 2017
helpline, benefits, advice

Our helpline service – the capacity of which is always stretched to the limit - has recently experienced an exceptional number of requests for assistance in relation to benefit claims. If you have already sent in a request for assistance we hope to be able to fulfill that request but are currently reviewing this and hope to be able to update you over the coming days.

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