July 2017

Published in ESRS Newsletter July 2017

 

European Narcolepsy Network (EU-NN)

In March 2017 the EU-NN held the 8th European Narcolepsy Day in Mallorca. The local organizing committee, chaired by Francesca Canellas from Palma de Mallorca, the advisory committee and the Spanish Narcolepsy Association did an outstanding job.

Under the heading “together for better care” 140 participants came together in this interactive congress  of European professionals working in the field of narcolepsy and hypersomnolence. Also members from most European Narcolepsy patient associations participated. The Dutch Narcolepsy Association showed their excellent movie about narcolepsy which can be seen on YouTube https://www.youtube.com/watch?v=zM9qbSxXwtQ. Thanks to the support by UCB  the movie is presently translated into several languages.
Together patients and experts reviewed the progress in both research and care within the past years and presented visions for the future. Highlights of the conference were presentations of both patients and clinicians on the ethical issues of brain donation and the very motivating reports on patient’s possibilities to achieve their “life goals” despite their disabling disease. Scientific presentations included latest results from the databank of the EU-NN, genetics, new diagnostic procedures and pharmacological therapies. A special focus was set on cognitive and psychiatric comorbidities and psychosocial aspects. The Young Scientists Award went to Mrs. Lucie Barateau from Montpellier for her study „Comorbidity between central disorders of hypersomnolence and immune-based disorders“.
The assembly of the EU-NN decided to have the next European Narcolepsy Day in Montpellier in May 2018. The exact date and preliminary program will be presented on the homepage of the EU-NN which is in status of transformation. It will be completely redesigned by Prof. Benevento from Bellinzona Switzerland. 
An educational event organized by UCB in cooperation with the EU-NN will be a Masterclass for Narcolepsy and Related Fields for European physicians and scientists working who are interested to learn more about this sleep disorder. This is an excellent opportunity to take the role of a scientific coordinator for European educational events.
There is some progress in the change of the database to Redcap which is slowly taking place. Soon all of our members will be able to add more patients into our database which right now comprises around 1800 patients. The board of the EU-NN has recently launched 6 scientific projects. All of the projects will include datasets from the database.
The European Narcolepsy Guideline is progressing. First meetings have taken place that served to structure the guidelines. We will try to implement the guideline after its publication in late 2018 into the national guidelines modifying them according to the national requirements.

The Board of EU-NN