Blog: In the media

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High Court judgement about Sodium Oxybate made public

16 June 2016

The judgment of the High Court in the judicial review about NHS England's refusal to fund sodium oxybate for a child was handed down on 15th June. It is now in the public domain and here is a link to it for anyone interested.

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USA - Feds Probe Drugmaker-Charity Connections

3 June 2016

Narcolepsy UK receives no funding from pharmaceutical companies and in the event that we were approached, we have a very transparent and strict criteria that must be adhered to.

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Judge overturns 'absurd' NHS decision not to treat narcoleptic 17-year-old

6 May 2016

The judge in the case criticised the organisation for a "thoroughly bad decision" and "absurd" policy. Mr Justice Collins said he would issue a mandatory order against NHS England after deciding it had acted unlawfully. He said the only proper course of action based on the facts was to order that the drug be provided.

Click here for story (Telegraph)

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New research into potential "orexin" medication

22 March 2016

Reset Therapeutics, Inc., announced a collaboration with an affiliate of Alkermes plc for the discovery, development and commercialization of novel orexin receptor modulators from Reset’s drug discovery platform. The orexin system is a key modulator of wakefulness, appetite and mood, and its dysregulation is associated with central nervous system (CNS) disorders such as narcolepsy and depression.

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Update on Bristol Pandemrix Compensation Appeal Hearing

1 February 2016

Our chair Matt O'Neill was a witness at a court hearing in Bristol on 26 January 2016 in support of an application to an appeal tribunal for payment under the Vaccine Damage Payment Act 1979. This was in support of a child that developed narcolepsy after receiving the Pandemrix Swine Flu Vaccine. It is important to us all as the main requirement is to define the level of disability associated with narcolepsy and although this case obviously relates to an individual, please share this update to show your support for the family concerned.

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Hope for the future?

27 September 2015

An interesting development suggests that a cure for narcolepsy might one day be possible.

Narcolepsy is now generally believed to be an auto-immune disorder resulting from the destruction of cells within the brain that are responsible for the production of hypocretin. As such, replacement or regeneration of those cells might lead to a treatment for narcolepsy that actually cures the condition, rather than just alleviates the symptoms.

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Narcolepsy UK chairman, BBC radio interview

8 March 2015

Narcolepsy UK chairman Matt O'Neill was interviewed as part of a program on sleep disorders for BBC Three Counties Radio show "Shrink Wrapped". Original air date 8th March 2015.

You can listen to the programme in full here