D’après Orphanet, il y avait, fin 2013, 2 512 associations de patients de ce genre, dont 213 associations régionales, 2 161 nationales, 72 européennes et 61 internationales.
According to Orphanet, by the end of 2013 there were 2512 rare diseases specific patients’ organisations including 2161 national, 213 regional, 72 European and 61 international organisations.