18th of March: European Narcolepsy Day
Madrid, March 18, 2010 - First European Day for Narcolepsy is an initiative of the European Network of Narcolepsy formally supported by the European Sleep Research Society. The European Network wants to highlight this day and it has launched a comic and a small book available on DVD.
Narcolepsy is characterized by excessive daytime sleepiness, seizures, muscle weakness induced by emotions and disrupted nighttime sleep. It is a devastating disorder that usually appears in adolescence. The diagnosis and early treatment prevent psychosocial consequences for patients and their families. This is the rationale for the attention of the disease in the European Day of Narcolepsy.
EDS has been recognized as the greatest risk to public health. Has a profound impact on quality of life, causes a disturbance in sustained attention, preventing a school achievement and causing an increased risk for traffic accidents and labor.
Narcolepsy The European Network (EU-NN), founded in 2008, consists of a group of clinical and scientific experts in the field of narcolepsy. The objectives of the EU-NN consist in promoting scientific research at European level narcolepsy and optimization of medical care for this disease in a broad sense.
Narcolepsy is a "rare disease" (5:10.000 inhabitants) but it is an important disorder from both a clinical standpoint as a scientist. The discovery that the loss of hypocretin neurons is the cause, has shed light on the physiological regulation of sleep. Have opened new lines of research concerning the interactions between sleep, metabolism, endocrine and autonomic nervous system.
Europe and the European institutions can only achieve a leadership position in this field through close cooperation. Basic and clinical researchers experienced are scattered throughout Europe. All by themselves, are few patients, or have limited facilities to carry out research with relevant impact. An adequate number of patients and implementation of cutting-edge techniques can be carried out only through close cooperation.
The EU-NN provides the opportunity to resolve these problems and facilitates cross-fertilization and synergistic collaboration. The basic tools to carry it out are the database and biobank available. The rules for entering data standardization and guarantee its quality and its modular structure, allows prospective data storage. The database will be launched formally on 18 March.
The current Board of the EU-NN is: 
Dr. Gert Jan Lammers, President, Prof. Claudio Bassetti, vice-president;
Prof. Geert Mayer, Secretary, Dr. Ramin Khatami, treasurer;
Prof. Yves Dauvilliers, Prof. Mehdi Tafti, Prof Thomas Pollmächer
On behalf of the Board,
Gert Jan Lammers, President
In Spain, the dissemination of the initiatives of the Spanish Society of Sleep to mark the World Day and the Day Dream European Narcolepsy supported by UCB Pharma, working in various activities to raise awareness of the disease among the Spanish population .
