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2021年亚太罕见病组织联盟
APARDO 大会

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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)

注册是免费的

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

  • 多个利益相关者的陈述和讨论

  • 与来自亚太地区的患者倡导者建立联系的机会

讨论嘉宾
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Karin Jager

Snr Director of Public Affairs and Patient Advocacy, Growth and Emerging Markets,Takeda

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Dr. Lucia Monaco

Chair of the Consortium Assembly, International Rare Disease Research Consortium (IRDiRC)

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Scott Williams

Head, Global Public Affairs, Rare Diseases and Rare Blood Disorders at Sanofi Genzyme

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Eric Obscherning

Secretariat, APEC Rare Disease Network

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Dr. William A. Gahl M.D. PhD

Senior Investigator, Medical Genetics Branch, Director National Human Genome Research Institute Co-Chair Treatment Access WG

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Rachel Yang, M.D. PhD

Rare Disease Advocate Representative, China Alliance for Rare Diseases (CHARD)

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Yann LeCam

CEO and Co-founder of EURODIS-Rare Diseases Europe

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Dr. Goh Choo Beng

Head of APAC Medical Affairs, Takeda

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Christine Cockburn

Head of Support and Operations Rare Cancers Australia

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Safiyya Gassman

Director, Policy & Public Affairs (Rare Disease & Gene Therapy), Pfizer

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Fiona Wardman

CEO, Australasian Hereditary Angioedema

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Edmund Lim

Co-Founder and President, Persatuan We Care Journey

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Yap Sook Yee

SMA Advocates, We Care Journey, Malaysia

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Dr. Phuoc Huy Do

Vietnamese Organization for Rare Diseases

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Salome Mekhuzla

Director, Global Development, World Federation of Hemophilia

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Jaime Christmas

CEO, New Zealand Amyloidosis Patients Association

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Prof. Dr. Duangrurdee Wattanasirichaigoon

Ramathibodi Hospital, Thailand

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Prof. Cherdchal Nopmaneejumruslers

Vice Director, Faculty of Medicine, Siriraj Hospital, Thailand

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Ruth Kuan-Ju Chen

Executive Director, Taiwan Foundation for Rare Disorders

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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

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Dr. Carmencita Padilla

MAHPS Professor and Chancellor, University of the Philippines Manila
Founding Chairman, Philippine Society for Orphan Disorders

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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

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Anders Olauson

Founder and Director, Ågrenska Centre, Sweden

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Eileen Li

Head of Medical Operations, Japan & APAC, Biogen

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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

我们的赞助商:

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议程
12月14日
半天会议(上午 9:00 – 下午 12:30)
  • 罕见病生态系统发展回顾(2019-2021)及未来展望
     

  • 罕见病基本药物的全球可及性:对亚太地区的启示

  • 利用全民医疗推动亚太地区罕见病管理

12月15日
半天会议(上午 9:00 – 下午 12:30)
  • 与罕见病共存:从情绪压力到情绪健康
     

  • 药物开发和政策制定过程中,来自患者的声音

  • 基因组学如何改变罕见病的诊断和治疗

完整议程在这里 >>>

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