Blog: Charity updates

node teaser

Julie Flygare at the Narcolepsy UK conference

17 April 2019

We are excited to announce that Julie Flygare will be a featured speaker at our 2019 Narcolepsy UK annual conference.

node teaser

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.

node teaser

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.

node teaser

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.

node teaser

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.

node teaser

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.

node teaser

Narcolepsy UK Conference 2018 presentation films now online

21 September 2018

During the recent Narcolepsy UK 2018 Conference in Manchester, we were able to livestream some of the speakers on social media. This was great for keeping people not able to travel to be with us engaged with activities, but was not able to offer the full experience. In particular, slides were not visible and sound levels were very low due to the limitations of the equipment used.

node teaser

Narcolepsy UK Conference: just days to go!

3 September 2018

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.

Pages