NUK attending Swedish Narcolepsy Association conference

node leader
18 November 2016

On my way to Stockholm to attend and speak at the annual conference of the Swedish Narcolepsy Association, Narkolepsiföreningen Sverige (NFS) who have funded the trip.

It’s three long years since I have been in Stockholm where the first European Pandemrix meeting was held in November, 2013. Since then, things have moved on in every country but at different speeds and with different results. Most of us, locked in a hotel room for what felt like two long days, will remember that weekend as one of the hardest and longest events we have ever been present at. Legal teams from each country, parents of Pandemrix vaccinated children, Narcolepsy patient groups - anger, tears, frustration, arguements, all in the name of understanding and action.

That was a very hard weekend for me personally and I know Peter Todd from HJA & Rebecca Malone who I first met there also feel the same way, but it did create common understanding and agreements that have stood the test of time.

I’m looking forward to meeting some of Swedish families again & hearing their new and current challenges as well as explaining where we are in the U.K. and what Narcolepsy UK are doing to help.

Apart from speaking about activities in the U.K., we will also meet to plan an agenda for a forthcoming meeting, secured by Peter Todd, (5th December) in the European Parliament with the current E.U. Health Commissioner, Vytensis Andriukaitis. 

I love this picture from 2013 - I’m greyer now.

Together we are strong - November 2013