November 2017 – European Narcolepsy Network (EU-NN)
European Narcolepsy Network (EU-NN)
With the support of Mr. Benevento from Switzerland and the persistent work of our board member R. Fronczek we could change our homepage to eu-nn.com. We have updated members, patient organizations and narcolepsy movies produced by the national societies which are also available on internet.
We recently had a EU-NN symposium at the World Sleep in Prague and will present our network again next year at the ESRS conference in Basel.
Thanks to good organization and sponsoring the European Narcolepsy Day in Mallorca in March 2017 was scientifically and financially on solid grounds. We will work and apply for further financial support for all our activities, i.e. scientific projects, the database and the pursuit of our teaching and publishing activities. In March 2018 together with UCB Pharma we organized a Masterclass Narcolepsy in Amsterdam. The program has been finalized and will be sent out soon.
Thanks to the initiative of C. Bassetti we are working on guidelines for the accreditation of “Centers of Excellence for Narcolepsy and Hypersomnolences”. The aim of the formal accreditation at a European level is to create a better visibility of these centers for patients and the health care systems allowing the Centers to focus more intensely on a solid diagnosis and treatment (medication plus psychosocial support).
Work on the European Narcolepsy guidelines are progressing. The guidelines have been approved by the ESRS, the EAN and of course by the EU-NN.
The Board of EU-NN