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Trustee Update 2020

6 February 2020

On behalf of the board of trustees and everyone at Narcolepsy UK, we’d like to welcome Amanda Molloy to the board and say a fond farewell to Steve Jones and Hugh Davies-Webb who stepped down in 2019. Matt O’Neill will continue as Chair & has now stood down from the board of the Neurological Alliance England to allow him to focus more on his core activities for Narcolepsy UK, raising awareness and fundraising, particularly in the corporate world.

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Xyrem - Urgent Yellow Card Request

5 February 2020

Recently we have been seeing ongoing issues with the seals of Xyrem bottles and also the quality of the inserts. 

This has been reported to UCB Pharma and they are investigating but after discussion with them, we have agreed that we should encourage anyone affected by this to use either the MHRA Yellow Card system and/or the UCB Cares telephone line to report their concerns.