国内外罕见病的保障政策研究

摘要

本文阐述了主要国家和地区罕见病患病率的标准及其发展趋势,孤儿药的遴选条件和价格制定的原则,以及导致孤儿药价格昂贵的原因,国际和国内对罕见病的主要保障政策;并以戈谢氏病为例,对青岛市、浙江省、上海市三地多方筹资补偿的实践做了简要介绍.%The paper describes the prevalence rate of rare diseases in major countries and regions, and the trend of its development. The se-lection criteria of orphan drugs, the principles of price setting, the reasons for high costs of orphan drugs, and the main international and domestic health security policy for rare diseases have been illustrated. Taking the Gaucher's disease as an example, the multiple funding sources and in-surance reimbursement policies of in Qingdao City, Zhejiang Province, and Shanghai Municipal are briefly introduced.