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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Old & New Friends in Oslo

23 April 2018

I left home for Oslo yesterday morning, having had an invite to attend and speak at Frambu (www.frambu.no), from old friends at NevSom - Norwegian Centre for Expertise for Neurodevelopment Disorders and Hypersomnias, Oslo University Hospital, a part of the Norwegian Advisory Unit on Rare Disorders.

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Donation Envelopes - An easy way to add Gift Aid

17 April 2018

We are now able to provide discreet donation envelopes which enable the easy collection of the information necessary to enhance the value of the donation through Gift Aid.

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Job opportunity - Benefits & Helpline Advisor

26 March 2018

Are you interested in working with Narcolepsy UK?

Benefits & Helpline Advisor required

Supplementing the work of Rebecca, who has recently reduced her hours following a change to her career path. We wish Rebecca well and are pleased she will still be working with us.

We seek a conscientious and dedicated person to work with our clients for 12 hours a week. Some day and some evening hours preferred, although we can be flexible with this we do need to have set hours when clients are able to contact you.

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Meeting of European Patient Advisory Group

25 March 2018

A very good couple of days spent this weekend talking about how the European Patient Advisory Group can assist in raising awareness of clinical trials for the Rest-On trial.

https://www.narcolepsy.org.uk/resources/clinical-trial-single-dose-sodium-oxybate

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Narcolepsy Charter - survey being developed

9 March 2018

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

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

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

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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