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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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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BBC radio Northampton interview

2 February 2019

Recently a person with narcolepsy, Heather Korbey, was interviewed on the BBC radio Northampton "Chaz Harrison" programme. We are grateful to Heather for taking the opportunity to help spread awareness of the condition and the reality of the way it affects her life.

The radio show is available to stream until 28th February 2019. Heather speaks about narcolepsy at around the 40 minute mark. It can be found by following this link: https://www.bbc.co.uk/sounds/play/p06wttll

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Narcolepsy medications: new website resources

24 January 2019

We are pleased to announce that we have added to the information available on our website regarding medications used in the treatment of narcolepsy.

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Neurological Patient Experience survey (England)

20 December 2018

In 2016 the Neurological Alliance ran a patient experience survey, gathering over 7000 responses, from patients with neurological conditions living in England (see previous blog post). The findings were used to campaign for better services and support for people with neurological conditions.

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Italian Narcolepsy Association (AIN), annual multidisciplinary seminar

15 December 2018

Italian Narcolepsy Association (AIN)

A very important aspect of our work is collaboration & engagement with other patient associations across the world and this weekend our Chair & Operations Manager are with other members of the EU Narcolepsy Association in Bologna, Italy for one of their regular annual meetings.

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New Helpline and Benefits Advisor

17 November 2018

We are pleased to introduce to you Linda Reynolds who has joined us as Helpline and Benefits Advisor.

Linda is married with one adult daughter and with a close relative who has narcolepsy and cataplexy. She has a rather eclectic work history ranging from lecturing to making designer wear, managing manufacturing departments and shops and ending as a civil servant working on Tax Credits and latterly Universal Credit.

We look forward to working with Linda to offer support and in particular help with benefits to the UK narcolepsy community.

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British Medical Journal article on Pandemrix vaccine

21 September 2018

Publishing this link to today’s British Medical Journal article on the use of the Pandemrix vaccine.

Have to question where the BMJ have been for the last 9 years and why they have chosen to focus on events in the Republic of Ireland.

That story needs telling but so do they all. Perhaps it felt a bit too difficult to publicise here when we needed support.

Numbers quoted from our website are historic & we were not contacted to re-validate ahead of this article being published.

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