… Italy, a meeting was held in June 2013 to build an alliance between the National Center for
Rare Diseases… for planning public health programs, while disease registries are designed to …

… Network International) efforts and initiative on URDs, the Italian program could take advantage
from such important know-how in terms of experience, protocols and standard operating …

… were identified, among them also “An EU programme for management of rare diseases”. …
the institution of the National Registry 3 for Rare Diseases in 2001, which was the first nucleus …

… The program aims to discover the genetic causes of rare diseases. With a structure based
on transversal committees and endowed with its own resources, it manages undiagnosed …

… Besides their low prevalence, rare diseases (RD) have in common certain characteristics: …
Rare Diseases. This centre is aimed to provide up-to-date information on rare diseases …

… the suspension of the program as well as the exclusion of the rare diseases area. Among …
were funded by AIFA in the field of rare diseases in terms of study completion, publications and …

… Italy has been the first country at European level to implement a population-based public …
to rare diseases. This study describes the current situation of the Italian National Rare Diseases …

… The Italian rare diseases scenario has something to … ’s rare diseases registry (VR-RDR)
in the north-east of Italy. A … of the expanded neonatal screening programs as they become …

… and, within a specific program for independent research, the Agency can fund non-profit
research in the field of orphan drugs and rare diseases (4, 5). In Italy for orphan drugs the same …

… to modify treatment during the course of the disease. The medical care of RD patients can …
in Tuscany (Italy) in the years 2008–2018. Data from the Registry of Rare Diseases of Tuscany …