可能性的矛盾:亚太地区的稀有景观

Ritu Jain, Chiuhui Mary Wang, Lisa Foster, Eileen Yangyang Li, Yukiko Nishimura, Kin Ping Tsang
{"title":"可能性的矛盾:亚太地区的稀有景观","authors":"Ritu Jain, Chiuhui Mary Wang, Lisa Foster, Eileen Yangyang Li, Yukiko Nishimura, Kin Ping Tsang","doi":"10.20517/rdodj.2023.42","DOIUrl":null,"url":null,"abstract":"The Asia-Pacific (APAC) region, home to 60% of the global population, has the highest number of Persons Living with a rare disease (PLWRD). To promote more equitable societies, the Asia Pacific rare disease Organization (APARDO), established in 2015, has been developing its regional position to promote collaboration, increase awareness among stakeholders, explore equitable and affordable diagnosis and treatment, and improve health outcomes and quality of life for all PLWRD. The APAC region’s heterogeneous population and complex healthcare environment pose distinctive challenges in addressing rare diseases. Through conferences, webinars, and contributions to global initiatives, APARDO is fostering connectivity and providing a platform as a part of the global rare disease (RD) community to address shared challenges. The development of APARDO to strengthen its global presence as the representative of the APAC RD region is vital for a more equitable world.","PeriodicalId":74638,"journal":{"name":"Rare disease and orphan drugs journal","volume":"2019 19","pages":""},"PeriodicalIF":0.0000,"publicationDate":"2024-02-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Paradox of possibilities: the rare landscape in the Asia Pacific Region\",\"authors\":\"Ritu Jain, Chiuhui Mary Wang, Lisa Foster, Eileen Yangyang Li, Yukiko Nishimura, Kin Ping Tsang\",\"doi\":\"10.20517/rdodj.2023.42\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"The Asia-Pacific (APAC) region, home to 60% of the global population, has the highest number of Persons Living with a rare disease (PLWRD). To promote more equitable societies, the Asia Pacific rare disease Organization (APARDO), established in 2015, has been developing its regional position to promote collaboration, increase awareness among stakeholders, explore equitable and affordable diagnosis and treatment, and improve health outcomes and quality of life for all PLWRD. The APAC region’s heterogeneous population and complex healthcare environment pose distinctive challenges in addressing rare diseases. Through conferences, webinars, and contributions to global initiatives, APARDO is fostering connectivity and providing a platform as a part of the global rare disease (RD) community to address shared challenges. The development of APARDO to strengthen its global presence as the representative of the APAC RD region is vital for a more equitable world.\",\"PeriodicalId\":74638,\"journal\":{\"name\":\"Rare disease and orphan drugs journal\",\"volume\":\"2019 19\",\"pages\":\"\"},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2024-02-29\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Rare disease and orphan drugs journal\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.20517/rdodj.2023.42\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"\",\"JCRName\":\"\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Rare disease and orphan drugs journal","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.20517/rdodj.2023.42","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
引用次数: 0

摘要

亚太地区(APAC)人口占全球人口的 60%,是罕见病患者(PLWRD)人数最多的地区。为了促进社会更加公平,成立于 2015 年的亚太罕见病组织(APARDO)一直在发展其区域立场,以促进合作,提高利益相关者的认识,探索公平和负担得起的诊断和治疗,并改善所有 PLWRD 的健康成果和生活质量。亚太地区的异质性人口和复杂的医疗保健环境为解决罕见病问题带来了独特的挑战。作为全球罕见病 (RD) 社区的一部分,APARDO 正在通过会议、网络研讨会和对全球倡议的贡献来促进连通性并提供一个平台,以应对共同的挑战。作为亚太地区罕见病 (RD) 的代表,APARDO 的发展对加强其在全球的影响力,对建立一个更加公平的世界至关重要。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
查看原文
分享 分享
微信好友 朋友圈 QQ好友 复制链接
本刊更多论文
Paradox of possibilities: the rare landscape in the Asia Pacific Region
The Asia-Pacific (APAC) region, home to 60% of the global population, has the highest number of Persons Living with a rare disease (PLWRD). To promote more equitable societies, the Asia Pacific rare disease Organization (APARDO), established in 2015, has been developing its regional position to promote collaboration, increase awareness among stakeholders, explore equitable and affordable diagnosis and treatment, and improve health outcomes and quality of life for all PLWRD. The APAC region’s heterogeneous population and complex healthcare environment pose distinctive challenges in addressing rare diseases. Through conferences, webinars, and contributions to global initiatives, APARDO is fostering connectivity and providing a platform as a part of the global rare disease (RD) community to address shared challenges. The development of APARDO to strengthen its global presence as the representative of the APAC RD region is vital for a more equitable world.
求助全文
通过发布文献求助,成功后即可免费获取论文全文。 去求助
来源期刊
自引率
0.00%
发文量
0
期刊最新文献
Fabry nephropathy: a treatable cause of chronic kidney disease Gene therapy for Dravet syndrome: promises and impact on disease trigger and secondary modifications Neuropathy and pain in Fabry disease The division of rare diseases research innovation at the national center for advancing translational sciences, NIH: mission, history, and current research activities Long-term treatment with insulin-like growth factor-1 in Phelan-McDermid syndrome: a case report
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
现在去查看 取消
×
提示
确定
0
微信
客服QQ
Book学术公众号 扫码关注我们
反馈
×
意见反馈
请填写您的意见或建议
请填写您的手机或邮箱
已复制链接
已复制链接
快去分享给好友吧!
我知道了
×
扫码分享
扫码分享
Book学术官方微信
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术
文献互助 智能选刊 最新文献 互助须知 联系我们:info@booksci.cn
Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。
Copyright © 2023 Book学术 All rights reserved.
ghs 京公网安备 11010802042870号 京ICP备2023020795号-1