survey

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Narcolepsy UK Conference: just days to go!

Blog post
3 September 2018
conference, Manchester, survey, charter, familial, Rosa Peraita-Adrados, Royal Society of Medicine, medicine & me

We are now into the final few days before our annual conference in Manchester and are making great progress in pulling together the key themes & focus areas from our recent survey. We hope you all booked your tickets to hear and see the results first-hand as we prepare to translate these into our Narcolepsy Charter.

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Charter Questionnaire is now closed

Blog post
3 August 2018
charter, survey, questionnaire

All of us here at Narcolepsy UK would like to say thank you for the massive response you provided to our charter questionnaire. We are already busily reviewing the content to present to you at the annual conference in Manchester 8th-9th September. 

Looking forward to seeing as many of you there as possible.

Link to conference booking - https://www.narcolepsy.org.uk/civicrm/event/info?reset=1&id=89

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Narcolepsy Charter – Consultation goes live!

Blog post
28 June 2018
charter, survey, questionnaire

One of our most important projects for 2018 is the development of the Narcolepsy Charter.

Aimed at tackling the challenges and discrimination faced by the narcolepsy community across the UK, the Charter will be a written statement of the rights of people with narcolepsy and their carers. It will set out the basic rights that people with narcolepsy and their carers deserve and should expect.

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Narcolepsy Charter - survey being developed

Blog post
9 March 2018
charter, survey, questionnaire

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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European Narcolepsy Day, Palma, Mallorca 2017 - Highlights

Blog post
Matt O'Neill
24 March 2017
European Narcolepsy Network, European Narcolepsy Day, Flamel, European Patient Advisory Group, Bioprojet, Wakix, Pitolisant, Neurological Alliance, Disability Rights UK, PIP, survey

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

Blog post
24 March 2017
Disability Rights UK, PIP, government, survey

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.

Subscribe to survey