March 2015

Published in ESRS Newsletter March 2015


European Narcolepsy Network (EU-NN)

The EU-NN has extended its prospective database and members have included more than 1000 patients with narcolepsy and other disorders of hypersomnolence.

Preliminary data will be presented at the 6th European Narcolepsy Day in Münster March 14-15th. A children’s database was recently added and data collection has commenced. The database provides a multitude of possibilities for collaborative studies, which have been adopted during the Board and Scientific Committee Meeting held in Amsterdam on 6th February, 2015. These studies will focuse on families with several affected patients, phenotyping HLA negative patients, sleep structure and better differentiation of hypersomnolence and validation of the Brighton Collaboration definition of narcolepsy. Further studies will be launched to identify risk factors for developing narcolepsy, including studies of patients who have had H1N1 infection.

The number of EU-NN members has increased to 27 full members.

We are currently preparing for the 6th European Narcolepsy Day conference to be held in Münster, Germany, from the 14th – 15th March. This unique conference welcomes both clinical and scientific professional working in the field of narcolepsy as well as patients, their families and representatives of narcolepsy patient associations throughout Europe. During the meeting the most important health provision gaps for patients with narcolepsy will be discussed and identified. We plan to create a Task Force that will prepare a white book on the most urgent issues to be submitted to the European Union. Elections for Board membership will take place, as some members will be demitting office at this time. We are hoping for a solid turnout and look forward to some lively discussion.

Geert Mayer, President of the EU-NN