【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。更多还原

【Abstract】 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.更多还原