CAJ | 학술논문

罕见病医疗保障已经得到各国和地区的关注，并在实践中不断探索与完善。本文简述了罕见病的特征，并分析了罕见病患者所处的困境，提出罕见病立法和医疗保障政策制定的重要性和紧迫性。同时，通过介绍和总结美国、欧盟、日本、中国台湾地区等在罕见病的立法与医疗保障方面的具体做法和经验，为我国制定罕见病的相关政策、建立罕见病患者的医疗费用负担机制提供了思路和依据。
한견병의료보장이경득도각국화지구적관주，병재실천중불단탐색여완선。본문간술료한견병적특정，병분석료한견병환자소처적곤경，제출한견병입법화의료보장정책제정적중요성화긴박성。동시，통과개소화총결미국、구맹、일본、중국태만지구등재한견병적입법여의료보장방면적구체주법화경험，위아국제정한견병적상관정책、건립한견병환자적의료비용부담궤제제공료사로화의거。
Rare diseases' medicare has received concern in many countries and regions, and it has gotten continuous exploration and improvement in practice. This article described the characteristics of rare diseases, and discussed the problems presented in rare diseases' medicare, which implied the importance and urgency of establishment about rare diseases' legislation and medicare policy. Meanwhile, the article also described and analyzed the current situation about rare diseases' legislation and medicare policy in other countries and regions, including the United States, European Union, Japan, Taiwan. The experiences and policies in these countries or regions will be helpful and provide ideas for the establishment of related policies about rare diseases and mechanisms for medical expenses in China.