Blog: Charity updates

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Narcolepsy Charter launches

12 August 2019

We believe that people with narcolepsy and their families and friends have the same rights to a full and rounded life as any other person without having to make this happen. The Charter is a written statement of these rights based on responses to an online survey of 302 people with narcolepsy and 149 supporters undertaken by Adelphi Research. The survey was made possible with support from Adelphi Research, Lincoln Medical Limited, The National Lottery Community Fund and UCB Pharma.

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Idiopathic Hypersomnia

12 August 2019

We are pleased to confirm that IH (Idiopathic Hypersomnia) patients are welcome to register with our charity and to use the services we offer in the hope this will make life easier for you. You will be treated equally with our current client base and are welcome to join us at Conference where Dr Biswajit Chakrabarti will take the podium to speak on this topic.

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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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Narcolepsy UK attend Narcolepsy Advisory Board in Zurich

18 May 2019

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

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

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

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Julie Flygare at the Narcolepsy UK conference

17 April 2019

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

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

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

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