Suffering in silence: Assessing rare disease awareness and management in Asia-Pacific

July 16, 2020


Suffering in silence: Assessing rare disease awareness and management in Asia-Pacific

July 16, 2020

Jesse Quigley Jones

Managing editor

Jesse is a managing editor for Economist Impact based in Asia, with a focus on healthcare.

Based in Hong Kong, Jesse has been working in Asia for over 10 years. Prior to the Economist Impact, he held roles in medical education, scientific publications and medical communications, working in multinational biopharmaceutical companies with a focus in vaccines and biologic medicines. Jesse has extensive experience researching and collating medical information and working with healthcare professionals and patient organisations to develop insight-driven communications programmes.

Jesse holds a BSc in Anatomy and Physiology from the University of Leeds. His editorial interests include the policy response to emerging public health issues and patient advocacy in infectious diseases.


The collective challenge of rare diseases has risen up the policy agenda in both the Asia-Pacific region and globally. Various new and revised health and social system measures in Australia, China, Japan, South Korea and Taiwan—along with the 2018 Asia-Pacific Economic Co-operation (APEC) Rare Disease Action Plan—reflect a growing recognition of the need to act.

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.


Other language versions:


Australia  | China  | Japan  | Korea  | Taiwan 


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Video highlights:

English | Simplified Chinese | Japanese | Korean | Traditional Chinese

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