Rare diseases: Cassone (FedEmo), “More commitment on the part of Regions and centers to enter data on haemophilia patients in the Mec register”

“We want to focus our attention on the importance of collecting our data within a pathology register that has already existed since 2017 at the Istituto Superiore di Sanità. This register is a Mec register and we would like the Regions and centers to make more efforts to ensure that these data flow into this register, which is not just a register that lists patients, but is an epidemiological register, which therefore collects data important both for scientific studies and for planning and organizing healthcare”. Cristina Cassone, president of the Federation of Haemophilia Associations – FedEmo, said this in a message addressed to FedEmo-Federation of Haemophilia Associations as part of the conference “I count! Mec: the pathology register and health data, fundamental knowledge and planning tools”, promoted on the occasion of the XX World Haemophilia Day which is celebrated throughout the world on 17 April.