Thursday, August 1, 2013

Narcolepsy UK Conference / Public Meeting - Narcolepsy from a Patients Perspective / Narcolepsy: Not Alone campaign

A quick post to bring a couple of things to peoples attention...

The Narcolepsy UK Conference
Details of this conference have now been finalised and the event will take place at the Park Inn hotel in Watford, London on Saturday, 13th September. The organisation have reserved a number of rooms at the Park Inn that attendees can book at a slightly cheaper rate than normal (£75 including breakfast), however I managed to get a double room there for Friday and Saturday nights (still including breakfast!) for £106 by booking via laterooms.com. This might be worth a look if people were thinking of travelling down on the Friday.

More details about the conference and how to book tickets here.


The FD Patient-focused Drug Development Initiative (PFDDI)
As many of you will know, narcolepsy was selected as one of the 12 initial diseases of interest to the PFDDI earlier in the year. The first public meeting to discuss narcolepsy from a patients perspective is to be held in Washington on 24th September. The meeting can be attended in person or virtually via an online link and everyone needs to register their attendance for both (which is free) by 13th September. The PFDDI maybe an American based initiative, however I'm sure most would agree that it has potential to benefit all PWN worldwide.

Registration for the public meeting can be made here and further information regarding the PFDDI can be be found here.


Narcolepsy: Not Alone Campaign
A great project idea from Julie Flygare to put narcolepsy on the map. Send in photos of 'Not Alone' banners as a way of raising awareness and seeing how many PWN there are ion the world. Link to project here. I'll be doing my photo soon :)




2 comments:

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