国外罕见病管理制度对中国的启示  

Enlightment of foreign management system of rare diseases to China

作　　者：王煜[1] 卢建华[2] 赵太宏[1] 肖雨龙[1] WANG Yu LU Jian-hua ZHAO Tai-hong XIAO Yu-long(Dept. of Medicine, the First Hospital of Nanjing, Nanjing Medical University, Nanjing 210006 School of Health Policy ＆ Management, Nanjing Medical University, Nanjing 210029, China)

机构地区：[1]南京医科大学附属南京医院(南京市第一医院)医务处,江苏南京210006 [2]南京医科大学医政学院,江苏南京210029

出　　处：《基础医学与临床》2017年第2期273-276,共4页Basic and Clinical Medicine

基　　金：江苏省科技发展计划(软科学研究)(BR2012052);江苏现代医院管理研究中心研究基金(JSY-3-2015-042);江苏现代医院管理研究中心研究基金(JSY-2-2016-061)

摘　　要：通过对部分国家和地区罕见病法案的分析,探讨罕见病管理的国际经验。中国应尽快推进罕见病立法,明确罕见病界定标准,加强转化医学研究,提高罕见病诊断治疗水平。应加强政策导向作用,完善激励措施,加强多部门协作,建立健全罕见病医疗保障体系,建立与中国国情相适应的罕见病管理体系。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 diagnosis 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 different departments and perfecting medical insurance system could be forceful accelerants to create and optimize the management system of rare diseases in China.

关 键 词：罕见病 罕用药 立法 界定标准 

分 类 号：R95[医药卫生—药学]