The provision of a high-quality comprehensive service depends upon defined standards and a network of hemophilia centers as summarized in the 10 European principles in haemophilia care. In the UK, the Haemophilia Doctors’ Organisation Temozolomide is an example of a large and effective collaboration of doctors who have been able to lead the developments in care and set standards to improve the lives of those with hemophilia. Similarly, patients have organized themselves into national

societies which have been very effective in patient advocacy and merged into the World Federation of Haemophilia, which has promoted hemophilia care particularly effectively in developing nations. Recent cooperation and networking of hemophilia centers across Europe has been instrumental in implementing international registries and a pharmacovigilance program (EUHASS) and

should play a key role in developing a system for certification of hemophilia care delivery (EUHANET). “
“In 2008 the 10 Principles of Haemophilia Care were outlined to provide a benchmark for haemophilia treatment. The EHTSB performed Palbociclib a survey to establish to what extent the Principles of Haemophilia Care were being applied throughout Europe. In total, 21 centres from 14 countries (France, UK, Germany, Switzerland, Sweden, Norway, the Netherlands, Belgium, Poland, Portugal, Slovakia, Spain, Greece and Italy), were surveyed. A central organization of haemophilia care (principle 1) was present in 79%, and a central patient registry in 57% (principle 2). National haemophilia care decision-making was performed by clinicians, ministries and patient organizations (principle 4). All had designated comprehensive care centres (CCC – principle 3), responsible the majority of severe patients, but in 36% some patients were

treated outside CCC/haemophilia treatment centres (HTC)s. Clotting factor concentrates were available everywhere, without dosing restraints (principle 5), including recombinant products in 86% of countries. Prophylactic treatment was available for all children but not for all adults (principle 7). Immune tolerance was available in all countries (principle 9). Home treatment was supported selleck products and taught by all centres (principle 6). At centre level, 86% had 24-h laboratory facilities and all participated in education and research (principle 10). An experienced haematologist was available at all centres, a paediatrician in 47%, and prompt out of hours review was available in all (principle 8). The Principles of Haemophilia Care were generally applied throughout Europe. Some aspects of centralization, national organization of care, use of registries, formal paediatric care and prophylaxis for adults may be improved. Haemophilia is characterized by repeated bleeding, especially in the joints, which eventually results in chronic crippling arthropathy. Replacement therapy with intravenous clotting factor has been available since the 1960s.