Française de Since400 Our reason for being Members Support the patient and his close relations Teach the patients and their family means to face the difficulties engendered Organize support groups Create links between the members Spread the information about the disease and the component of medical treatment Defend the rights and the interests of the persons Fight for the integration of the children in the educational system Promote the rechearch and etablish links with the medical world 1984
Main means of action A half-time secretary A corresponding member in each department Stays for young adults
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The narcolepsie in France The creation, in 2004, Reference Centers Rare Diseases, allowed a better care. For narcolepsy and hypersomnias; two Centers: Paris: Hopital de l' Hotel Dieu - Professeur Damien Léger. Montpellier: Hopital Universitaire Gui de Chauliac - Professeur Yves Dauvilliers. The epidemiological studies evaluate between and the numbers of persons affected by these pathologies. Only one in five would be correctly diagnose. These centers make the diagnosis, prescribe treatments and insure a very important medical follow-up. For the patient, the symptoms decrease, they remain the school, social, occupational and family impacts... It is our reason for being! Each of us is, according to the specialists, is a case private individuals... The treatment is thus custom-made. Modiodal, Ritaline, with or without Téronac, Effexor, Xyrem ( GhB) : the most the current. No difficulty to have them until now…. The French Agency of Medicines made close the laboratory producing, in other, the Teronac - very effective on cataplexias - for pointless motives, this Agency did not make close the great laboratory producing the Mediator...
ANC works in close collaboration with the Reference Centers: The Workshops of Narcolepsy :conference discusses on four specific themes. In Paris by Pr Damien Léger. In Bordeaux by Pr Philip. In Montpellier by Pr Yves Dauvilliers. Others means of action ANC thanks Pr Yves Dauvilliers for all the brought help. We exchange s almost every week on various questions.Together we look for a means to make broadcast, on the television, the movie made realize AIN. At the same time, he suggested us, with the agreement of the President of AIN, using your posters. By his intermediary, AIN and ANC are very close. Grazie mille Presidente, ANC member of: Alliance of the Rare Diseases Orphanet Eurordis INSV National institute of the Sleep and the Vigilence
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