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Disability Rights UK survey on PIP problems

Blog post
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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Sodium oxybate (Xyrem) – Ex gratia provision to victims of Pandemrix

Resource article

Scheme for ex gratia funding of Xyrem to people who have made personal injury claims after developing narcolepy caused by Pandemrix vaccine

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Houses of Parliament Debate - follow up

Blog post
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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Houses of Parliament Debate today

Blog post
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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Narcolepsy sufferers face uphill struggle in Wales

Blog post
7 December 2016

The lack of a treatment centre in Wales for people suffering from narcolepsy is causing problems for people with the condition.

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