Associazione Emocromatosi
(L’Associazione per lo Studio dell’Emocromatosi e delle Malattie da Sovraccarico di Ferro ETS)
The Association for the Study of Haemochromatosis and Iron Overload Diseases ETS
Location: Monza, Italy
Email: info@emocromatosi.it
Website: https://www.emocromatosi.it/
We are committed to advancing research, spreading awareness of haemochromatosis and iron overload diseases, facilitating early diagnosis, and supporting patients and their families.
Ci impegniamo a sviluppare la ricerca, diffondere la conoscenza sull’emocromatosi e le malattie da sovraccarico di ferro, facilitarne la diagnosi precoce e supportare i pazienti e i loro familiari.
In Italy, hereditary haemochromatosis follows a North-to-South gradient: the p.Cys282Tyr mutation affects up to 1 in 500 people in northern subalpine areas due to Celtic ancestry, dropping to under 1 in 2,000 in the south.
Our Association successfully campaigned to have haemochromatosis included in the official list of diseases covered by healthcare exemption in 2001. Under exemption Code RCG100, the National Health Service (SSN) covers all diagnostic tests, iron monitoring, and treatments free of charge. Regional centres of excellence, like the San Gerardo dei Tintori IRCCS (Scientific Institute for Research, Hospitalisation and Healthcare) Foundation in Monza, provide multidisciplinary care and advanced screening. The Association collaborates with the Centre for Rare Diseases located within San Gerardo, Monza, offering patient guidance, funding research, and campaigns for early diagnosis.
Historically discarded as medical waste, blood from therapeutic venesections can now be used for transfusions, legalised in 2015 following intense advocacy by the Association. Italian law limits whole blood donations to four times a year for men and two for women of childbearing age. Because patients in the intensive induction phase require far more frequent venesections, blood exceeding these limits must be discarded. Furthermore, not all local donor centres currently oblige. A successful exception is the transfusion centre at Monza’s San Gerardo Foundation, which fully utilises all blood from therapeutic donations made at its Centre for Rare Diseases.