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The National Network of Rare Diseases was established by Ministerial Decree 279/2001. It is made up of health structures of the regional systems that contribute, in an integrated manner and in relation to specific skills and functions, to develop prevention and surveillance actions, improve interventions aimed at diagnosis and treatment and promote information to citizens, and training for operators. The main nodes of the Network are the centres (identified by the Regions through a regulatory act) for the diagnosis and treatment of patients with rare disease and the regional and/ or interregional registers that feed the National register for Rare Diseases established at the Istituto Superiore di Sanità (ISS), as a scientific-institutional tool for the surveillance of rare diseases in Italy.
