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[The national plan for orphan rare diseases: nearly 10 years on]
1Service de Médecine Interne, Hôpital Cochin, Université Paris-Descartes, 27 rue du Faubourg Saint-Jacques, 76014 Paris, France. loic.guillevin@cch.aphp.fr
Abstract:
The management of orphan rare diseases has been the goal of two successive government plans since 2004. They allowed the management of these diseases to be handled initially through reference centers, then by specialized centers that were specifically created. The resulting benefits to patients, standardization of management protocols, dissemination of information through ORPHANET, and the development of both fundamental and clinical research have clearly justified the setting up of these plans. Other associated plans are expected to follow in the years to come.
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