Enlightment of foreign management system of rare diseases to China / 基础医学与临床

Through analyses of rare diseases management of several countries and regions , successful practice has been discussed .Legislation of rare diseases should be activated as soon as possible to release specific standard of rare diseases .Accelerating development of translational medicine is a feasible approach to improve the level of diag -nosis and treatment of rare diseases .Strengthening the orientation of management policy should be put into a more significant position to promote incentives of stakeholder in this area .Both enhancing the joint collaboration of differ-ent departments and perfecting medical insurance system could be forceful accelerants to create and optimize the management system of rare diseases in China .

Preliminary study on Chinese standards for defining rare diseases / 中国卫生政策研究

Objective:To suggest approaches for the establishment of Chinese standards for defining rare disea-ses and advance corresponding Chinese legislation. Methods:By comparing the standards for defining rare diseases in Europe, the United States, and other countries and studying key influencing factors of standards, this paper proposes suggestions for the establishment of proper Chinese standards for defining rare. Results and Conclusion:Social and e-conomic development levels, medical development levels and social security levels influence the establishment of standards. It is recommended that the national conditions should be taken into consideration and the number of pa-tients, severity of the diseases and economic indicators of orphan drugs be used to define rare diseases in China.