As the region begins to get to grips with rare diseases, it will need to address significant challenges, some of which are still emerging. Health and social systems are making progress in many of these areas, but finding solutions remains a work in progress.
This Economist Intelligence Unit study, sponsored by CSL Behring, looks at the nature of the rare disease challenge in the region, how prepared five of its economies are to face it, and reviews the initiatives aiming to provide better care. It draws on a substantial survey of over 500 clinicians, interviews with 16 academic, medical, government and patient experts, and extensive desk research.
In November-December 2019, The Economist Intelligence Unit surveyed 503 healthcare professionals across five Asia-Pacific markets to gauge their understanding of rare diseases and identify the challenges faced by national health systems. Respondents comprised currently practicing specialist physicians (n=172), general practitioners (n=229), nurses (n=40) and pharmacists (n=62). Markets included were Australia (n=103), China (n=100), Japan (n=100), South Korea (n=100) and Taiwan (n=100).
In addition, in-depth contextualising interviews were conducted with 16 expert representatives of clinical practice and patient organisations to inform our research programme and this report. Our sincerest thanks go to the following for their time and insight:
- Takeya Adachi, program officer, Agency for Medical Research and Development, Japan
- Younjhin Ahn, Division of Rare Diseases, Korean National Institute of Health Centre for Biomedical Sciences, South Korea
- Matthew Bellgard, professor and director of eResearch, Queensland University of Technology, Australia and chair of the Asia Pacific Economic Cooperation (APEC) Rare Disease Network, Australia
- Gareth Baynam, clinical geneticist and director of the Undiagnosed Diseases Program Genetic Services of Western Australia, Australia
- Dong Dong, research assistant professor, Chinese University of Hong Kong, Hong Kong SAR
- Elizabeth Elliott, professor of Paediatrics and Child Health, University of Sydney, Australia
- Kevin Huang, founder, Chinese Organization for Rare Disorders, China
- Ritu Jain, president, Asia-Pacific Alliance of Rare Disease Organisation, Singapore
- Sonoko Misawa, associate professor, Chiba University Graduate School of Medicine, Japan
- Yukiko Nishimura, founder and president, NPO ASrid (Advocacy Service for Rare and Intractable Diseases’ Multi-Stakeholders in Japan)
- Min-Chieh Tseng, co-founder, Taiwan Foundation for Rare Diseases, Taiwan
- Gregory Vijayendran, chair, Rainbow Across Borders
- Richard Vines, chair, Rare Cancers Australia, Australia
- Jiaan-Der Wang, director of the Centre for Rare Diseases and Haemophilia, Taichung
- Veterans General Hospital, Taiwan
- Yi’ou Wang, secretary-general, Illness Challenge Foundation, China
- Chao-Chun Wu, deputy director general, Health Promotion Administration Taiwan
This research project was sponsored by CSL Behring. This report was written by Paul Kielstra and edited by Jesse Quigley Jones of The Economist Intelligence Unit.
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Snapshots:
Australia | China | Japan | Korea | Taiwan
日本における希少疾患の現状： 認知度・QoL向上に向けた課題と取り組み
침묵 속의 고통: 한국의 희귀질환 인 식 및 관리현황 평가
Video highlights:
English | Simplified Chinese | Japanese | Korean | Traditional Chinese
