Volume 2, July 2006 - EHC

Volume 2, July 2006THE POLISHHAEMOPHILIA SOCIETYThe Polish Hemophilia Society was founded in1988. Now it has about 750 members in 11 regionalchapters. The Society works in close cooperationwith its Medical Council consisting of haematologistsand other doctors with experience inmedical care of haemophilia. We publish a quarterlynewsletter, we have also published severalbooklets on haemophilia meant for people withhaemophilia and their families.There is also an Internet discussion forum run bypeople with bleeding disorders.In the past Polish Hemophilia Society organizedand conducted a lot of summercamps for childrenwith hemophilia. But now we don’t do it dueto lack of clotting factors.Population of Poland: 38,5 million.Total number of registered patients with hereditarybleeding disorders in Poland: 3249 personsHaemophilia A:severe 1102moderate 314mild 542total 1958(158 patients with haemophilia A have inhibitor)Haemophilia B:severe 178moderate 74mild 68total 320(3 patients with haemophilia B have inhibitor)lack of Factor VII 115lack of Factor XIII 8other bleeding disorders 125Total 3249It is estimated that 27% of haemophilia cases and80% of vWD cases have not been registered yet.Factor concentrates are bought every year by theMinistry of Health. The use of factor concentrateshave been far below the WHO norm (2 IU/percapita/year);here are data from 2000 - 2006:Per capita Factor VIII and Factor IX usageYear per capita F.VIII per capita F.IX2000 1,262001 1,852002 1,41 0,22003 1,37 0,242004 1,65 0,372005 1,87 0,372006 2,1 (anticipation)Vice-President of the Polish Haemophilia SocietyZdzislaw GrzelakVice-President of the Polish Haemophilia SocietyAdam SumeraPresident of the Polish Haemophilia SocietyZbigniew Sendulkavon Willebrand disease:type 1 572type 2 34type 3 117total 72314