Nobody beats Italy when it comes to rare diseasesby Roberta Lunghini - 2017.07.27
Italy represents the highest number of centers of excellence in Europe for rare diseases. The country’s network of these highly specialized centers (ERN – European Reference Networks): amounts to 189 out of a total of 942 in Europe (about 20%). Representation of patients in European Patient Advocacy Groups (ePAGs),is also noteworthy, with 25 out of 142 (17.6%). These are the data that emerged in "MonitoRare", the third report published by the Italian Federation of Rare Diseases UNIAMOF.I.M.R., presented to a group of Italy’s Parliament. During which, a profound territorial heterogeneity throughout the country emerged from the point of view of support and therapies available. Above all, geographic disparity stood out, with only 13.6% of the south having the benefit of these complex structures, 19.7% found in the Center, and 66.7% in the North.
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