Overview
The National Network of Rare Diseases was established by Ministerial Decree 279/2001. It consists of health structures of the regional systems that contribute, in an integrated manner and in relation to specific skills and functions, to develop prevention actions, implement 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 centers (identified by the Regions through a regulatory act) for the diagnosis and treatment of patients with rare diseases and the regional and / or interregional Registries that feed the National Register of Rare Diseases established at the Istituto Superiore di Sanità (ISS), scientific-institutional tool for the surveillance of rare diseases in Italy. The activity of the Italian National Institute of Health (ISS) on the topic of rare diseases was institutionalized in 2001 with the birth of the National register of rare diseases - DM279 / 01, the first important surveillance tool to understand the epidemiology of these pathologies and support the national and regional programming.
The Italian National Register of Rare Diseases is established at the National Institute of Health-ISS in implementation of Article 3 of the Ministerial Decree 279/2001.
Public funding
Demographics
Dataset
Access and processing of data are permitted in compliance with current provisions on the protection of personal data and with the adoption of the security measures referred to in the decree 318 of the President of the Republic July 28, 1999. Data access is also allowed by operators of the Reference Centers where the Regional / Interregional Registers are based) specifically authorized, for the purposes referred to in art. 2, paragraph 3.
Contact
National center for rare diseases, Istituto Superiore di Sanità-ISS, Viale Regina Elena 299, 00161, Rome, Italy