Rare diseases

National networks

The Italian network on rare diseases was established by ministerial decree 279/2001. It is made up of health structures of the regional systems that provide specific skills and functions in order to develop preventive actions, implement surveillance actions, improve interventions aimed at diagnosis and treatment and promote information to citizens and operator training.

The main nodes of the network are the centers (identified by the Regions by regulatory act) for the diagnosis and treatment of patients with rare disease and the regional and / or interregional registers that feed the national register of rare diseases established at the Italian National Institute of Health (ISS), the scientific-institutional tool for the surveillance of rare diseases in Italy.