A call for action to improve access to care and treatment for patients with rare diseases in the Asia-Pacific region
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- 作者：Swee-Sung Soon (1)
Gilberto Lopes (2)
Hwee-Yong Lim (3)
Durhane Wong-Rieger (4)
Salmah Bahri (5)
Lucy Hickinbotham (6)
Anand Jha (6)
Bor-Sheng Ko (7)
Diana MacDonell (8)
Jasmine Roah-Fang Pwu (9)
Ruby Shih (10)
Ekaphop Sirachainan (11)
Dong-Churl Suh (12)
Janet Wale (13)
Xiao Zhang (14)
Hwee-Lin Wee (1)
1. Department of Pharmacy ; National University of Singapore ; 18 Science Drive 4 ; 117543 ; Singapore ; Singapore
2. Johns Hopkins University School of Medicine ; 733 North Broadway ; 21205 ; Baltimore ; MD ; USA
3. Novena Cancer Centre ; Mount Elizabeth Novena Specialist Centre ; 38 Irrawaddy Road ; 329563 ; Singapore ; Singapore
4. Institute for Optimizing Health Outcomes ; Toronto ; Canada
5. Pharmaceutical Services Division ; Ministry of Health ; Block E1 ; E3 ; E6 ; E7 & E10 ; Parcel E ; Federal Government Administration Centre ; 62590 ; Putrajaya ; Malaysia
6. Novartis Oncology ; 20 Pasir Panjang Road ; #10-25/28 Mapletree Business City ; 117439 ; Singapore ; Singapore
7. National Taiwan University Hospital ; No.7 ; Zhongshan S. Road ; Zhongzheng District ; Taipei City ; 10002 ; Taiwan
8. Pharmaceutical Benefits Advisory ; Bedford Park ; Australia
9. Center for Drug Evaluation 1聽F ; No.15-1 ; Sec.1 ; Hangjou S. Road ; Taipei ; Taiwan
10. Division of Medical Review and Pharmaceutical Benefits ; Bureau of National Health Insurance ; No.140 ; Sec.3 ; Hsinyi Road ; Taipei ; 10634 ; Taiwan
11. Department of Medicine ; Ramathibodi Hospital ; 34/1 Soi Saengsuksa School ; Isarapap Road ; Min Buri ; Bangkok ; 10510 ; Thailand
12. College of Pharmacy ; Chung-Ang University ; 221 Heukseok-dong ; Dongjak-gu ; Seoul ; South Korea
13. HTAi Interest Group for Patient/Citizen Involvement in Health Technology Assessment ; Melbourne ; Australia
14. The Public Health School ; Southeast University ; 2 Sipailou Rd ; 210096 ; Nanjing ; China - 关键词：Challenges ; Policy ; Access to care ; Asia ; Pacific region
- 刊名：Orphanet Journal of Rare Diseases
- 出版年：2014
- 出版时间：December 2014
- 年：2014
- 卷：9
- 期：1
- 全文大小：161 KB
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How Specific Legislation for Rare Diseases and Orphan Drugs is Changing Life for Some Patients in Taiwan.
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- 出版者：BioMed Central
- ISSN：1750-1172
文摘
This article is a call for action to the relevant stakeholders to improve access to care and treatment for patients with rare diseases in the Asia-Pacific region by looking into three main areas: (a) developing legislative definitions to confer enforceable protection, (b) creating or strengthening policies by objectively measuring the impact brought about by rare diseases and establishing platforms to reach out to the rare disease community, and (c) fostering collaboration across sectors and countries. It is hoped that these suggested actions can catalyze discussions and progress in the region.