20th Anniversary of Legislation for Rare Disorders
This publication reviews the achievements of the implementation of Taiwan Rare Disease and Orphan Drug Act (RDODA) in the past 20 years. It contains the services and supports from the government agencies (Health Promotion Administration, National Health Insurance, and Taiwan Food and Drug Administration), the consultations on the useful approaches with the medical law professionals, the comments from the public health experts in terms of the social welfare, media propagation, sociology, the managements of non-profit organizations, and the opinions of patient groups and family members of the rare diseases (RD). It is hoped this book can be served as a reference for the subsequent relevant legislative campaigns.
This book is accompanied by the RD family’s stories. It reports how the RD families are protected by the law and presents an overview of the implementation of the RDODA. It is expected that the readers will be more familiar with RD so as to encourage more related professionals with talents for medicine, health care, biotechnology, public health, social welfare to join the battles against RD as well as accelerate the progress of new medical technology.
The book 20th Anniversary of Legislation for Rare Disorders in Taiwan records the evolution and the achievements of RDODA and witnesses the transformation in RD families. In addition to serving as an important basis for future policy formulation, we look forward to sharing our valuable experiences and resources with the other countries and offering the references for the international RD policies.
Part of the funding for this book is appropriated from the tobacco tax by the Health Promotion Administration. We are also grateful for the supports and assistance from enterprises and all sectors of our society to make it possible.
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Table of Contents
Preface
RD History
Speaking for RD
Witness RD
Illuminating RD
RD Outlook
Appendix
