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 supporting Irish Pandemrix® victims

26 July 2019
pandemrix, Ireland, swine flu, vaccine, vaccination, GlaxoSmithKline

Following an approach by the Irish litigation law firm, Michael Boylan, acting for c.80 adults & children affected by Narcolepsy arising from the administration of the Swine Flu vaccine Pandemrix® between October 2009 and the end of March 2010, our Chair Matt O’Neill will be supporting them in their pursuit of recognition of damages caused and their claim for compensation. Pandemrix® was manufactured by GlaxoSmithKline.

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Call for national neurology plan following largest ever survey

10 July 2019
Neurological Alliance, survey

People with neurological conditions are facing long waiting times, poor access to specialists and a lack of personalised care. That’s according to a new report published by The Neurological Alliance. The survey was the largest ever survey of people with neurological conditions in England with 10,339 responses. It also found failings in the social care and welfare system, as well as discrimination in the workplace for people with neurological conditions.

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Building partnerships to raise awareness

16 June 2019

Narcolepsy UK has collaborated with UCB and Aintree University Hospital on a pilot programme to raise awareness

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Narcolepsy UK attend Narcolepsy Advisory Board in Zurich

18 May 2019
Takeda, pharmaceutical, Matt O'Neill, advisory board, patient experience, Zurich

In Zurich this week, Matt O'Neill took part in a Narcolepsy Advisory Board to enhance understanding of narcolepsy from the patient perspective.

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Template GP letter added to Resources

17 May 2019
resources, GP, template, letter, benefits, diagnoses

Sometimes you may need a doctor's letter as evidence of your diagnosis of narcolepsy, for instance to support an application for benefits.

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Speaking today at the Royal Society of Medicine

10 May 2019
Royal Society of Medicine, Matt O'Neill

Narcolepsy UK represented at the Royal Society of Medicine event "Narcolepsy & Other Central Hypersomnias - Current and Future Trends".

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Workplace accommodations - Nikki's story

9 May 2019
National Trust, Erddig, Nikki, workplace, accommodations

Nikki works for the National Trust, and shares her experience of having to accommodate her job with her condition of narcolepsy.

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Julie Flygare at the Narcolepsy UK conference

17 April 2019
conference, Manchester, Julie Flygare, Project Sleep, Wide Awake and Dreaming

We are excited to announce that Julie Flygare will be a featured speaker at our 2019 Narcolepsy UK annual conference.

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Provigil / Dexamfetamine shortage - Teva UK

1 April 2019
dexamfetamine, dex, sulphate, modafinil, provigil, Teva UK

We (Narcolepsy UK) have vigorously & repeatedly stressed the importance of these medicines being available and despite direct approaches by Matt (chairperson of our trustees), we are still unable to make re-supply happen any sooner. Teva UK have offered their apologies and appreciate that this doesn’t help from a patient perspective. They have also assured us that they are doing everything they can to prioritise the release and shipment of stock and for the future, have put a flag on their system to ensure that Narcolepsy UK are informed of any supply challenges if they arise.

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Narcolepsy UK needs YOU - to help set up a local meeting

15 February 2019
meet up, Networking

We are looking for people to help run simple meet up events across the nation. Week commencing 11th March 2019.

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