European Narcolepsy Network (EU-NN)
EU-NN has been growing since 2015 and counts 43 members from 17 European countries. Together with these members, the database – the heart of EU-NN – has been growing to up to more than 1400 prospective cases.
Twenty to fifty new cases and follow-up cases are entered into the database monthly. Ramin Khatami has submitted a publication about “The European Narcolepsy network (EU-NN) database,” which has been accepted by JSR. A second publication is in progress. A handbook will be prepared on the correct use of the database.
Recently the 7th European Narcolepsy Day was held in Helsinki under the umbrella of the Finnish Narcolepsy Society. Markku Partinen had organized a program for patients and scientists in a wonderful historic building. For the first time, children and adolescents were invited. The program was split into a scientific program and a patients’ program, with the focus on “patient related outcome measures.”
During the Assembly of the EU-NN, Michel Billiard from Montpellier, France was nominated as an honorary member. The Young Scientist Award went to Alexander Lind, Sweden, for his work “A/H1N1 antibodies and TRIB2 autoantibodies in narcolepsy patients diagnosed in conjunction with the Pandemrix vaccination campaign in Sweden 2009-2010.” Some of the by-laws of the EU-NN were changed, which now allow basic researchers to become members. Four board members were elected. Geert Mayer, Germany, was elected president, Markku Partinen, Finland, treasurer, Aleksandra Wierzbicka, Poland, member at large and Rolf Fronczek, The Netherlands, secretary. Thanks go to Rosa Peraita, Spain, who has served the EU-NN for many years and has organized the 4th European Narcolepsy Day in Madrid and to Renata Riha, Scotland, who has served the board as secretary throughout the last two years. The funding committee will be run by Tatiana Kharkevitch, Belgium, and the EU-NN vice president Claudio Bassetti, Switzerland. The Assembly decided that the 8th European Narcolepsy Day will take place in March 2017 in Palma de Mallorca hosted by Francesca Canellas, Spain.
The Narcolepsy Think Tank (organized by the ASSS/BENESCO) was held with the participation of the President, Vice-President and several members of the SC EU-NN. In 2015, the board has met several times with the scientific committee and launched several scientific projects, which will make use of the EU-NN database. The homepage will be improved and more patient information is planned, with focuses on pregnancy, driving and other “hot topics.” The collaboration with the European Narcolepsy Associations will be strengthened. The annual meetings are a good place to exchange local activities and plan activities on a European level. This year, the EU-NN will present its activities for the first time at the EURORDIS conference in Edinburgh in May 2016. At this years’ ESRS conference in Bologna, we will have an EU-NN session to which everyone is invited. An update of the European narcolepsy guideline will be prepared together with the European Academy of Neurology Sleep Panel.
Geert Mayer, President of the EU-NN