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:

Snapshots:

Australia  | China  | Japan  | Korea  | Taiwan 

无声的苦难：中国大陆罕见病的认知与管理评估

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

無聲的苦難：評估台灣對於罕見疾病之認知與管理

Video highlights:

English | Simplified Chinese | Japanese | Korean | Traditional Chinese

In November-December 2019, The Economist Intelligence Unit surveyed 103 practising healthcare professionals from Australia, as part of an Asia-Pacific analysis of understanding and challenges faced in managing rare diseases.

Our survey respondents from Australia comprised general practitioners or primary care physicians (45.5%), specialist physicians (34.2%), nurses (8.0%) and pharmacists (12.3%). Respondents predominately worked in private (49.7%) and public or teaching healthcare institutions (46.5%).

 

Full reports:

Snapshots:

Australia  | China  | Japan  | Korea  | Taiwan 

无声的苦难：中国大陆罕见病的认知与管理评估

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

無聲的苦難：評估台灣對於罕見疾病之認知與管理

Video highlights:

English | Simplified Chinese | Japanese | Korean | Traditional Chinese

In November-December 2019, The Economist Intelligence Unit surveyed 100 practising healthcare professionals from Taiwan, as part of an Asia-Pacific analysis of understanding and challenges faced in managing rare diseases.

Our survey respondents from Taiwan comprised general practitioners or primary care physicians (46%), specialist physicians (34%), nurses (10%) and pharmacists (10%). Respondents were split between private (54.0%) and public (21%) or teaching healthcare institutions (25%).

 

Full reports:

Snapshots:

Australia  | China  | Japan  | Korea  | Taiwan 

无声的苦难：中国大陆罕见病的认知与管理评估

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

無聲的苦難：評估台灣對於罕見疾病之認知與管理

Video highlights:

English | Simplified Chinese | Japanese | Korean | Traditional Chinese