Please use this identifier to cite or link to this item: https://www.um.edu.mt/library/oar/handle/123456789/103574
Title: The European Haemophilia Network (EUHANET)
Authors: Makris, Michael
Calizzani, Gabriele
Fischer, Kathelijn
Gatt, Alexander
Gilman, Estelle
Hollingsworth, Robert
Lambert, Thierry
Lassila, Riitta
Mannuccio Mannucci, Pier
Peyvandi, Flora
Windyga, Jerzy
Keywords: Hemophilia -- Complications
Hemophilia -- Research -- European Union countries
Blood coagulation factor VIII
Issue Date: 2014
Publisher: S I M T I Servizi srl
Citation: Makris, M., Calizzani, G., Fischer, K., Gatt, A., Gilman, E., Hollingsworth, R., ...Windyga, J. (2014). The European Haemophilia Network (EUHANET). Blood Transfusion, 12(Suppl. 3), s515-s518.
Abstract: Haemophilia A and B are rare inherited bleeding disorders due to reduced factor VIII (FVIII) or factor IX (FIX) activity, occurring in 1 in 10,000 and 1 in 50,000 of the population respectively1,2. Several other bleeding disorders such as deficiencies of factors I, II, V, VII, X, XI and XIII are even rarer. When the deficiency is severe these disorders present with spontaneous bleeding whilst for milder disorders traumatic bleeding is observed3. When bleeding occurs patients are treated with clotting factor concentrates which can be plasma derived or recombinant. Individuals with inherited bleeding disorders are cared for in Haemophilia Centres. There is major disparity in patient access to Haemophilia Centres throughout Europe4, although it must be appreciated that this publication was based on data from the individual country patient organisations and was not based on national registries. There is a need for harmonisation of the data available in care centres, national data sources and patient organisations and these activities are planned to be improved by the European Haemophilia Network (EUHANET) project. There is also variation in the number of Haemophilia Centres within European countries and whilst in some there are over 80 Haemophilia Centres in others there is only a single centre. [Excerpt]
URI: https://www.um.edu.mt/library/oar/handle/123456789/103574
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