New European Treatment Guidelines and Centers of Excellence for Narcolepsy
Published in ESRS Newsletter December 2018
As the new president of the EU-NN it is a pleasure to inform you about the activities of our network over the last few months. Geert Mayer and Markku Partinen left the EU-NN board: please join us in thanking them for their hard work and positive energy they devoted to the EU-NN. Giuseppe Plazzi (vie-president) and Birgitte Kornum (member-at-large) joined us and with Aleksandra Wierzbicka (treasurer), Rolf Fronczek (secretary) and myself constitute the new board.
The EU-NN is currently working on the creation of a central management office to support, standardize and eventually professionalize the organization of our future activities and events. Furthermore, we are currently involved in:
- production of a new European narcolepsy treatment guidelines (a collaboration between the EU-NN, ESRS and EAN)
- production of a “statement paper” on Diagnosis of narcolepsy and its borderland
- establishment of a procedure to recognize European Centres of Excellence/Referral for narcolepsy
Please save the date for the upcoming European Narcolepsy Master Class and the EU-NN Narcolepsy Day which will take place in Bern on May 17 and 18-19, 2019, respectively. The master class will cover all basics in the pathophysiology, diagnosis and treatment of narcolepsy. The Narcolepsy Day will create a setting where patients, caregivers and researchers can meet and discuss the latest scientific findings and treatment insights. The draft programs of these 2 events are already available:
Narcolepsy Day:
https://www.chorel.eu/esf/intranet/docs/narcolepsyday/narcolepsyday_program.pdf
Narcolepsy MasterClass:
https://www.chorel.eu/esf/intranet/docs/narcolepsymc/narcolepsymc_program.pdf
The new board is very much looking forward to serve and develop further the EU-NN. We hope to see you all at the various events and will always welcome your input, energy and ideas!
Prof. Claudio L. Bassetti
President of the European Narcolepsy Network (EU-NN)