Suffering in silence: Assessing rare disease awareness and management in As...
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
Suffering in silence: Assessing rare disease awareness and management in Ta...
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
Suffering in silence: Assessing rare disease awareness and management in Ja...
In November-December 2019, The Economist Intelligence Unit surveyed 100 practising healthcare professionals from Japan, as part of an Asia-Pacific analysis of understanding and challenges faced in managing rare diseases.
Our survey respondents from Japan comprised general practitioners or primary care physicians (44%), specialist physicians (35%), nurses (6%) and pharmacists (14%). The majority of respondents reported working in private (64%) and public or teaching
healthcare institutions (16%).
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
Suffering in silence: Assessing rare disease awareness and management in As...
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
Suffering in silence: Assessing rare disease awareness and management in Ja...
In November-December 2019, The Economist Intelligence Unit surveyed 100 practising healthcare professionals from Japan, as part of an Asia-Pacific analysis of understanding and challenges faced in managing rare diseases.
Our survey respondents from Japan comprised general practitioners or primary care physicians (44%), specialist physicians (35%), nurses (6%) and pharmacists (14%). The majority of respondents reported working in private (64%) and public or teaching
healthcare institutions (16%).
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
Suffering in silence: Assessing rare disease awareness and management in So...
In November-December 2019, The Economist Intelligence Unit surveyed 100 practising healthcare professionals from South Korea, as part of an Asia-Pacific analysis of understanding and challenges faced in managing rare diseases.
Our survey respondents from South Korea comprised general practitioners or primary care physicians (45%), specialist physicians (35%), nurses (10%) and pharmacists (10%). Respondents reported working in predominantly private (58%) and public (12%) 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
Suffering in silence: Assessing rare disease awareness and management in As...
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
Suffering in silence: Assessing rare disease awareness and management in Ta...
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
Suffering in silence: Assessing rare disease awareness and management in So...
In November-December 2019, The Economist Intelligence Unit surveyed 100 practising healthcare professionals from South Korea, as part of an Asia-Pacific analysis of understanding and challenges faced in managing rare diseases.
Our survey respondents from South Korea comprised general practitioners or primary care physicians (45%), specialist physicians (35%), nurses (10%) and pharmacists (10%). Respondents reported working in predominantly private (58%) and public (12%) 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
희귀질환에 대한 이해와 함께 아태지역국가들은 중대한 과제들을 해결해야 하며 일부과제들은 아직도 부상 중이다. 많은 아태국가들의 보건사회제도가 발전하고 있지만해결책을 모색하는 과정은 아직도 진행 중이다
The Economist Intelligence Unit 의 이번보고서는 CSL Behring 의 후원으로 아태지역에서의 희귀질환의 양상을 살펴보고, 다섯아태 국가의 희귀질환 대응 수준 및 환자진료개선을 위한 정책들을 검토한다. 본 보고서는500 명 이상의 임상가, 16 명의 학계, 의료계, 정부, 환자 전문가들을 대상으로 한 설문조사와 광범위한 자료조사를 토대로작성되었다.
2019 년 11,12 월에 걸쳐 EIU 는 아시아태평양 지역에서의 희귀질환에 대한이해수준과 의료제도 차원의 과제를파악하기 위해 지역내 다섯 국가의 503 명의의료 전문가들을 대상으로 설문조사를실시했다. 설문 참가자들은 현직 전문의172 명, 일반의 229 명, 간호사 40 명, 약사62 명으로서, 국가별 분포는 호주 103 명,중국 100 명, 일본 100 명, 한국 100 명, 대만100 명과 같다.이와 더불어 16 명의 임상 전문가 및 환자단체 대표들과 자문/ 심층 인터뷰를 실시하였다. 지면을 빌어 아래의 전문가/대표들의 시간과 고견에 심심한 감사의 말씀을 전한다:
Takeya Adachi, 일본 의학연구개발소프로그램 담당
안윤진,한국 국립보건연구원생명의과학센터 난치성질환과
Matthew Bellgard, 호주 퀸즐랜드공과대학교 교수 및 전자연구소장, 아시아태평양경제협력체 (APEC) 희귀질환네트워크 의장
Gareth Baynam, 호주 웨스턴오스트레일리아 주 미진단 질환프로그램 유전학 서비스 과장 및 임상유전학 전문가
Dong Dong, 홍콩 특별자치구중문대학교 연구조교수
Elizabeth Elliott, 호주 시드니 대학교소아 청소년과 교수
Kevin Huang, 중국 희귀질환연합 창립자
Ritu Jain,싱가포르 아시아태평양 희귀질환연합 대표
Sonoko Misawa, 일본 지바대학교의과대학원 부교수
Yukiko Nishimura, NPO ASrid (일본희귀난치성 질환 이해관계자 권리증진서비스)창립 대표
Min-Chieh Tseng, 대만 희귀질환재단공동설립자
Gregory Vijayendran, Rainbow Across Borders대표
Richard Vines, 호주 Rare Cancers Australia 대표
Jiaan-Der Wang, 대만 타이충 보훈병원희귀질환 및 혈우병 센터장
Yi’ou Wang, Illness Challenge Foundation사무국장
Chao-Chun Wu, 대만 건강증진청 사무차장
본 연구는CSL Behring사의 후원으로이루어졌으며 보고서 작성은 Paul Kielstra (EIU), 편집은 Jesse Quigley Jones(EIU)가 담당하였다.
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
Suffering in silence: Assessing rare disease awareness and management in Ja...
In November-December 2019, The Economist Intelligence Unit surveyed 100 practising healthcare professionals from Japan, as part of an Asia-Pacific analysis of understanding and challenges faced in managing rare diseases.
Our survey respondents from Japan comprised general practitioners or primary care physicians (44%), specialist physicians (35%), nurses (6%) and pharmacists (14%). The majority of respondents reported working in private (64%) and public or teaching
healthcare institutions (16%).
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
Suffering in silence: Assessing rare disease awareness and management in As...
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
Suffering in silence: Assessing rare disease awareness and management in So...
In November-December 2019, The Economist Intelligence Unit surveyed 100 practising healthcare professionals from South Korea, as part of an Asia-Pacific analysis of understanding and challenges faced in managing rare diseases.
Our survey respondents from South Korea comprised general practitioners or primary care physicians (45%), specialist physicians (35%), nurses (10%) and pharmacists (10%). Respondents reported working in predominantly private (58%) and public (12%) 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
Suffering in silence: Assessing rare disease awareness and management in As...
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
Suffering in silence: Assessing rare disease awareness and management in Ta...
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
Suffering in silence: Assessing rare disease awareness and management in Ja...
In November-December 2019, The Economist Intelligence Unit surveyed 100 practising healthcare professionals from Japan, as part of an Asia-Pacific analysis of understanding and challenges faced in managing rare diseases.
Our survey respondents from Japan comprised general practitioners or primary care physicians (44%), specialist physicians (35%), nurses (6%) and pharmacists (14%). The majority of respondents reported working in private (64%) and public or teaching
healthcare institutions (16%).
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
Suffering in silence: Assessing rare disease awareness and management in As...
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
Suffering in silence: Assessing rare disease awareness and management in Au...
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
Suffering in silence: Assessing rare disease awareness and management in So...
In November-December 2019, The Economist Intelligence Unit surveyed 100 practising healthcare professionals from South Korea, as part of an Asia-Pacific analysis of understanding and challenges faced in managing rare diseases.
Our survey respondents from South Korea comprised general practitioners or primary care physicians (45%), specialist physicians (35%), nurses (10%) and pharmacists (10%). Respondents reported working in predominantly private (58%) and public (12%) 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
Suffering in silence: Assessing rare disease awareness and management in As...
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
Suffering in silence: Assessing rare disease awareness and management in Au...
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
Suffering in silence: Assessing rare disease awareness and management in Ja...
In November-December 2019, The Economist Intelligence Unit surveyed 100 practising healthcare professionals from Japan, as part of an Asia-Pacific analysis of understanding and challenges faced in managing rare diseases.
Our survey respondents from Japan comprised general practitioners or primary care physicians (44%), specialist physicians (35%), nurses (6%) and pharmacists (14%). The majority of respondents reported working in private (64%) and public or teaching
healthcare institutions (16%).
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%).
Suffering in silence: Assessing rare disease awareness and management in As...
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
Suffering in silence: Assessing rare disease awareness and management in Au...
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
Suffering in silence: Assessing rare disease awareness and management in Ja...
In November-December 2019, The Economist Intelligence Unit surveyed 100 practising healthcare professionals from Japan, as part of an Asia-Pacific analysis of understanding and challenges faced in managing rare diseases.
Our survey respondents from Japan comprised general practitioners or primary care physicians (44%), specialist physicians (35%), nurses (6%) and pharmacists (14%). The majority of respondents reported working in private (64%) and public or teaching
healthcare institutions (16%).
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 South Korea, as part of an Asia-Pacific analysis of understanding and challenges faced in managing rare diseases.
Our survey respondents from South Korea comprised general practitioners or primary care physicians (45%), specialist physicians (35%), nurses (10%) and pharmacists (10%). Respondents reported working in predominantly private (58%) and public (12%) or teaching healthcare institutions (25%).
Suffering in silence: Assessing rare disease awareness and management in As...
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
Suffering in silence: Assessing rare disease awareness and management in Au...
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
Suffering in silence: Assessing rare disease awareness and management in Ja...
In November-December 2019, The Economist Intelligence Unit surveyed 100 practising healthcare professionals from Japan, as part of an Asia-Pacific analysis of understanding and challenges faced in managing rare diseases.
Our survey respondents from Japan comprised general practitioners or primary care physicians (44%), specialist physicians (35%), nurses (6%) and pharmacists (14%). The majority of respondents reported working in private (64%) and public or teaching
healthcare institutions (16%).
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:
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