Collaborative care of patients with hemophilia in Japan

Abstract

Hemophilia A and B are rare inherited bleeding disorders occurring in 1–5 persons per 10000 individuals in a given population. About 6000 patients with hemophilia are treated with clotting factor concentrates in approximately 1000 medical institutes in Japan. As a result, there is large disparity in patient access to the proper use of various clotting factor concentrates, which have been considerably developed in recent years. In addition to bleeding control, there is a need for the comprehensive care of hemophilia patients with various handicaps such as arthropathy. However, it is difficult for medical institutes, except for hemophilia treatment centers, to offer comprehensive care. Therefore, the Japanese hemophilia network committee (JHNC) was organized by the Japanese Society of Thrombosis and Hemostasis. JHNC is composed of hemophilia comprehensive care centers, hemophilia treatment centers, and other hemophilia care institutes. In collaboration with hemophilia treatment centers and hemophilia care institutes, hemophilia comprehensive care centers will provide comprehensive and personalized care to patients with hemophilia.