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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European Narcolepsy Day, Palma, Mallorca 2017 - Highlights

24 March 2017

Mid-March is always our busiest time of year, with more meet-ups arranged around the country each year and the gathering of the clans at the European Narcolepsy Network “European Narcolepsy Day” meeting held in a different host nation each year and now in it’s 8th year.

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Disability Rights UK survey on PIP problems

24 March 2017

Narcolepsy UK would like you to help us by completing this survey from Disability Rights UK. Disability Rights UK have been asked by the MPs on the House of Commons Work and Pensions Work and Pensions Select Committee to help in its investigation of problems with Personal Independence Payment (PIP).

The MPs are keen to receive evidence of problems disabled people have experienced with the PIP claim, assessment and appeals process.

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Muddy Trainers - Marathon Update

24 March 2017

Just over four weeks to go until our family marathon effort in support of Narcolepsy UK

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European Patient Advisory Group - new clinical trial

17 March 2017

This year we have a great story to kick-off European Narcolepsy Day!

Narcolepsy UK have facilitated a meeting to initiate the creation of a European Patient Advisory Group to work closely with pharmaceutical companies on research and clinical trials of new medicines for Narcolepsy.

Even collectively, we would struggle to fund research but this way, we hope that we can provide our knowledge and assistance to make things happen faster.

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Houses of Parliament Debate today

8 March 2017

This morning we will be at the Houses of Parliament for a 30 minute debate on Narcolepsy secured by Dinah Forbes via her MP, Tracy Brabin.

We will report back later today but you will be able to follow the meeting live on BBC Parliament.

Following this, we will be joining Di Forbes & Tracy Brabin in a meeting with Nicola Blackwood, Parliamentary Under-Secretary of State for Public Health and Innovation in the Department of Health.

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Houses of Parliament Debate - follow up

8 March 2017

Narcolepsy UK will be relentless in their pursuit of all of the issues raised in Parliament today. This post summarises the points raised.

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Narcolepsy UK visits DVLA

3 March 2017

On 8 February 2017 Narcolepsy UK attended a meeting at the DVLA in Swansea.

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Narcolepsy UK Posters

2 March 2017

We have created a range of new poster designs, which are now available from our website to be printed for display wherever you might want to help spread the word and raise awareness.

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