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2021年亚太罕见病组织联盟
APARDO 大会
提升罕见病诊疗的优先级
第 1 天：12 月 14 日，星期二（上午 9:00 – 下午 12:30）
第 2 天：12 月 15 日，星期三（上午 9:00 – 下午 12:30）
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关于事件
把事情做好：在推进罕见病项目中进行小规模干预
亚太罕见病组织联盟（APARDO）汇集了来自亚太地区罕见病领域具有代表性的患者组织和意见领袖代表，旨在分享经验和增强交流，倾听来自患者的声音，致力于推进疾病研究、实现资源共享、推广最佳实践以及扩大地区合作。
2020 年，亚太地区的国家或多或少都受到了来自COVID-19 的影响，在罕见病的预防、诊断、治疗和管理工作的方方面面遭受挑战。
但我们依然坚定对罕见病“坚持到底”的承诺，并希望2021年一切能够逐渐恢复“正常”。很遗憾，我们无法通过线下会议让大家能有面对面的交流，但我们将在12月举办线上区域大会。
我们诚邀您赞助和加入。
强调
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多个利益相关者的陈述和讨论
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与来自亚太地区的患者倡导者建立联系的机会
讨论嘉宾
Karin Jager
Snr Director of Public Affairs and Patient Advocacy, Growth and Emerging Markets,Takeda
Dr. Lucia Monaco
Chair of the Consortium Assembly, International Rare Disease Research Consortium (IRDiRC)
Scott Williams
Head, Global Public Affairs, Rare Diseases and Rare Blood Disorders at Sanofi Genzyme
Eric Obscherning
Secretariat, APEC Rare Disease Network
Dr. William A. Gahl M.D. PhD
Senior Investigator, Medical Genetics Branch, Director National Human Genome Research Institute Co-Chair Treatment Access WG
Rachel Yang, M.D. PhD
Rare Disease Advocate Representative, China Alliance for Rare Diseases (CHARD)
Yann LeCam
CEO and Co-founder of EURODIS-Rare Diseases Europe
Dr. Goh Choo Beng
Head of APAC Medical Affairs, Takeda
Christine Cockburn
Head of Support and Operations Rare Cancers Australia
Safiyya Gassman
Director, Policy & Public Affairs (Rare Disease & Gene Therapy), Pfizer
Fiona Wardman
CEO, Australasian Hereditary Angioedema
Edmund Lim
Co-Founder and President, Persatuan We Care Journey
Yap Sook Yee
SMA Advocates, We Care Journey, Malaysia
Dr. Phuoc Huy Do
Vietnamese Organization for Rare Diseases
Salome Mekhuzla
Director, Global Development, World Federation of Hemophilia
Jaime Christmas
CEO, New Zealand Amyloidosis Patients Association
Prof. Dr. Duangrurdee Wattanasirichaigoon
Ramathibodi Hospital, Thailand
Prof. Cherdchal Nopmaneejumruslers
Vice Director, Faculty of Medicine, Siriraj Hospital, Thailand
Ruth Kuan-Ju Chen
Executive Director, Taiwan Foundation for Rare Disorders
Dr. Koh Ai Ling
Associate Consultant, KK Women's and Children's Hospital, Singapore
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Dr. Meow-Keong Thong
MBBS, MPaeds, MD, FHGSA (Clinical Genetics), FAMM, FASc
Professor of Paediatrics and Consultant Clinical Geneticist
Head, Genetics & Metabolism Unit, Department of Paediatrics, Faculty of Medicine, University of Malaya, Malaysia
Dr. Carmencita Padilla
MAHPS Professor and Chancellor, University of the Philippines Manila
Founding Chairman, Philippine Society for Orphan Disorders
Dr. Marla Melanie Alcausin
Director of the Newborn Screening Reference Center Research Assistant Professor at the National Institutes of Health of the University of the Philippines Manila
Anders Olauson
Founder and Director, Ågrenska Centre, Sweden
Eileen Li
Head of Medical Operations, Japan & APAC, Biogen
Katherine Beaverson
Senior Director and Patient Advocacy Lead, Rare Disease Research Unit, Pfizer
Jill Morjarla
Senior Business Development Director, IQVIA Asia Pacific
Harpeet Ram
President and Founder , EVR Consulting LLC
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