罕見疾病用藥之相關法規檢視【本期企劃】 試閱
Reviewing the Regulations of Rare Diseases and Orphan Drugs
罕見疾病防治及藥物法於2000年8月實施，2019年8月開始將邁入第20個年頭，在施行19年之際，回顧過去，雖然一路以來政府已有更多的投入與照顧，但也有因法規僵硬，致使政策停滯不前，甚或倒退之處。本文將介紹罕見疾病用藥的相關法規與制度，以及目前所遭遇的困境，亦希望參考國外運作累積的經驗，提供臺灣作為借鏡，以尋求解決之道。
Since the implementation of Rare Disease and Orphan Drug Act is in Aug. 2000, the 20th year of implementation is coming up in Aug. 2019. At this moment, we look back and find that government has put more into taking care of rare disease patients but still not enough. Due to the rigid regulations, the policy is stagnant or even backward. This article will introduce the regulations and policies of orphan drugs and the dilemma we face, and also hope that by taking advantage of the good foreign experience, can provide us as a way to seek solutions together.
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