Establishment of Care System for Hemophilia in China: Current Status and Future Prospect / 罕见病研究

ABSTRACT

Hemophilia is a X-linked recessive hereditary bleeding disorders. The patients need to receive replacement treatment with coagulation factors in their whole lives. The medical care of hemophilia depends on the awareness of the medical professionals, patients, and their family members; on the accessibility to the medication for treatment; on the insurance policies, and etc. This article presents the forming process of the medical care for hemophilia in China, including joining the World Federation of Hemophilia(WFH), forming the Hemophilia Treatment Center Collaborative Network of China(HTCCNC), initiating the national hemo-philia registry system, and organizing hemophilia patients associations. In the meantime, the article presents the clinical practice of tiered care system for hemophilia in China, providing reference to the medical professionals and policy makers involving in the care of rare diseases in China.