Blog: In the media

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Welcome to World Narcolepsy Day!

22 September 2020

Today (September 22nd) is the second annual World Narcolepsy Day. This day is dedicated to raising awareness of narcolepsy on a global scale. Established by 24 patient advocacy organisations across 6 continents in 2019, World Narcolepsy Day unites the international narcolepsy community to inspire action, increase public knowledge, and elevate the voices of the 3 million people living with narcolepsy worldwide.

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New Narcolepsy Awareness Video

16 September 2020

The Nederlandse Vereniging Narcolepsie have shared with us a link to a YouTube video for narcolepsy awareness they have recently uploaded. They have done this for World Narcolepsy Day 2020 (Sept. 22, 2020) as part of their ambition to raise awareness of narcolepsy on a global scale.

https://www.youtube.com/watch?v=TQsOXLYRBgo&feature=youtu.be

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Glimmer of Hope photography competition

10 September 2020

Same but Different is a not-for-profit organisation which uses the arts for positive social change by working in partnership with organisations, communities and individuals to highlight inequalities and bring communities closer together.

The Glimmer of Hope photography competition is an opportunity to visually express the hope that exists for people affected by rare disease. The deadline also happens to coincide with World Narcolepsy Day.

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Vaccine Injury Compensation

23 April 2020

Vaccine Injury Compensation for a child with narcolepsy caused by seasonal flu vaccine

We are pleased to be able to report the successful outcome of the first case of its kind, an English appeal tribunal has now found that a child’s narcolepsy was likely caused by the seasonal flu vaccine and consequently found that a vaccine injury compensation payment under the Vaccine Damage Payment Act 1979 is due to the child in question.

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Narcolepsy on "The One Show" (23rd Jan 2020)

23 January 2020

"The One Show"

Tonight (Thursday 23rd January)

BBC 1 @ 7pm

Our Chair, Matt O'Neill, will be live on the show talking about Narcolepsy with Dr Zoe Williams

We very much thank the young ladies also appearing.

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World Narcolepsy Day

26 August 2019

Narcolepsy UK partners with organisations across six continents to create inaugural World Narcolepsy Day on September 22nd, 2019

Narcolepsy UK is excited to announce that it is coming together with 24 organisations around the world to establish World Narcolepsy Day. This ground-breaking day, which will take place on Sunday, Sept. 22, 2019, will be dedicated to raising critical awareness for narcolepsy on a global scale.

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Narcolepsy UK supporting Irish Pandemrix® victims

26 July 2019

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

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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Speaking today at the Royal Society of Medicine

10 May 2019

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

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