July 2013

(Published in: ESRS Newsletter July 2013, click here to go to Table of Contents)

European Narcolepsy Network (EU-NN)

March 2012 – March 2013

The 4th European Narcolepsy Day (END) was held in Madrid, March 16-17, chaired by Dr. R. Peraita-Adrados (see www.narcolepsy-international.org ). A multidisciplinary audience of around 200 people, from 11 European countries followed the meeting. The speakers presented state of the art presentation and/or hot topics concerning physiopathology, genetics, metabolic aspects, and childhood narcolepsy with cataplexy. Data from our retrospective and prospective EU-NN databases were presented. The retrospective database study has also been accepted for publication by the Journal of Sleep Research, and provides clinical information on the largest cohort of narcolepsy patients ever studied.

The ‘Day of the Patient’ was another feature of the meeting. Patients met with representatives from six European countries in an attempt to gather in a European network of patient associations, which will bring many benefits to those suffering this disease, in terms of therapies and work issues. One of the first actions to be taken is the building of a website.

Dr. Francesca Poli from the University of Bologna was the recipient of the EU-NN 2013 Young Scientist Award with the publication: “High prevalence of precocious puberty and obesity in childhood narcolepsy with cataplexy”. Poli F et al. Sleep, 2013; 36:175-81.

During the EU-NN Assembly (also in Madrid), three board members stepped down (C Bassetti, G Mayer and Y Dauvilliers), and R Peraita-Adrados and M Partinen were elected as new members of the Board. GJ Lammers will remain president for one additional year. The Assembly participants elected Copenhagen as the site for the 5th END in March 2014. P. Jennum will organise the meeting. The next Assembly will also be held in Copenhagen.

The EU-NN currently has 23 affiliated laboratories, and is still growing. Besides the publication on the retrospective database, there have been two other recent publications on behalf of the EU-NN: in the J Sleep Res on narcolepsy and pregnancy, and in ‘Vaccine on Narcolepsy as an adverse event following immunization: case definition and guidelines for data collection, analysis and presentation’.

For more information, including a list of affiliated laboratories, see our website: http://www3.unil.ch/wpmu/eunn/ .

On behalf of the EU-NN,

Gert Jan Lammers, President