This year the 8th European Narcolepsy Day organized by the European Narcolepsy Network (EUNN) in cooperation with the Spanish Narcolepsy Association is taking place in the wonderful city of Palma de Mallorca. Hosted by our member and colleague Dr. Francesca Canellas members of 15 European Narcolepsy patient groups and many European Scientists and Clinicians specialized in the field of narcolepsy and related disorders of daytime sleepiness will attend this annual conference. The topic of the conference is „together for better care“. Better care for these rare disorders is necessary and requires the input of both patients and medical staff. Together means that patients and scientist and clinicians will present the latest scientific and medico-social resultsand discuss them with the aim of improving diagnostic, medical and psychosocial standards within Europe.
 
The heart of the EU-NN is its database with more 1500 datasets of European narcolepsy patients. The latest results of this database will be presented by Ramin Khatami from Switzerland. The database allows us to get insights into the present status of narcolepsy patients in Europe and shows us many of the unmet needs. One of the evaluations of the database shows that it still takes years from the onset of narcolepsy to its diagnosis, which is not acceptable. Other issues are the denial of access to the few medications for narcolepsy in some European countries.
Besides news on the immunogenetics of narcolepsy this meeting is dedicated to the comorbidities of this disease, i.e. eating disorders and psychiatric diseases. A special focus will be on children and on counseling parents, teachers and the patients themselves how to manage this disease.
One of the aims of this meeting will also be the preparation of new European management guidelines in collaboration with the European Academy of Neurology and the European Sleep Research Society.
We plan to make this European Narcolepsy Day a success to spread the news about narcolepsy and its related fields throughout Europe for patients, medical doctors and the health authorities.
 
 

Geert Mayer
EUNN board - President

 

 


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