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2017第十二届国际罕见病与孤儿药大会暨第六届中国罕见病高峰论坛北京 · 9月7日-10日

发布时间：2017/04/21

2017第十二届国际罕见病与孤儿药大会暨第六届中国罕见病高峰论坛（12th Annual ICORDConference and 6th China Rare Disease Summit 2017）将于2017年9月7日-10日在北京JW万豪酒店隆重召开。

本次大会由国际罕见病与孤儿药大会（ICORD）、罕见病发展中心(Chinese Organization for Rare Disorders, CORD)、北京协和医院共同主办，主办方将邀请来自世界各地罕见病领域的专家学者、临床医生、医药企业、测序机构、政府部门、罕见病组织、患者家庭以及媒体朋友共同参与，预计与会人员将超过700人。届时全球目光都将聚焦中国，各利益相关方围绕“罕见病的全球挑战与中国角色”这一主题展开交流与合作。

罕见病是人类医学面临的最大挑战之一，目前已知有近7000种罕见病，而80%是由于基因缺陷所致，具有遗传性。我们已经看到，在各利益相关方的共同努力下，各国家和地区在罕见病领域的研究、诊断、治疗及医疗保障方面都取得了很大的进展，其中，中国就是一个在此领域表现最积极的国家之一。

然而，我们也不得不正视全球患者所面临的巨大困境，缺医少药问题突出、科研进展缓慢、全球政策壁垒高筑等核心问题，无不时刻在提醒我们，罕见病必须要纳入到全球公共健康优先考虑的社会议题中。今年9月，我们共聚北京，诚邀您参与本次会议，和我们一起共同推动全球罕见病事业共赢与发展。

本次大会将邀请全球近100位最顶尖的专家学者，重点讨论以下八大议题：

● 罕见病的临床诊治与进展

Rare diseaseclinical care and research

● 孤儿药的研发与转化医学

Orphan drugR&D and translational medicine

● 精准医学与罕见病诊断

Precisionmedicine for rare diseases

● 罕见病患者登记体系研究

Rare diseasepatient registry

● 罕见病与孤儿药相关政策进展

Rare diseaserelated policies

● 罕见病患者组织的角色

Roles played bypatient organizations

● 罕见病全球合作与共同行动

Global collaboration on rare diseases

● “我们的故事”

Our Rare Story

—— 主办方 ——

—— 大会主席 ——

Manuel Posadasir MD, PhD

ICORD 主席

西班牙皇家卡洛斯三世卫生研究院罕见病研究中心主任

黄如方先生

罕见病发展中心（CORD）创始人、主任

张抒扬教授

医学博士

中国医学科学院北京协和医院副院长

大会时间:

2017年9月7日-10日

大会地点:

中国北京JW万豪酒店

（北京市朝阳区华贸中心建国路83号）

大会官网:

www.icord2017.com

2016年ICORD南非会议

2016年第五届中国罕见病高峰论坛

嘉宾名单（按首字母排序，持续更新中）：

Ana Rath , Ph.D,Director,Orphanet, France

Brian Kaspar, Ph.D, Chief Scientific Officer, AVEXIS, INC.USA

Cheng-hua Lee, Deputy Director General, National Health InsuranceAdministration Ministry of Health and Welfare,Taiwan,China

Chen Lee, Ph.D,Director,Instituteof Hematology, Chinese Acedemy of Medical Sciences.China

Durhane Wong-Rieger, President of the Canadian Organization forRare Disorders, Canada

Francis X .McCormack, MD,Department of Internal Medicine, University of Cincinnati School of Medicine. USA

Gayatri Rao ,Director for the Office of Orphan Products Development, FDA, USA

Guangping Gao,Ph.D. Professor,Microbiology & Physiological SystemsPenelope BoothRockwell Professor in Biomedical Research,Director, Horae GeneTherapy Center and Vector Core,University ofMassachusetts Medical School, USA

Gumei Liu, MD, Ph.D, Office of Orphan Products Development,FDA, USA

Harvey F. Lodish,Ph.D, Professorof Biology and Professor of Bioengineering, Massachusetts Institute ofTechnology. USA

Jianmin Liu, Professor, Director of Endocrinology Department, RuiJin HospitalShanghai Jiao Tong University of Medicine, China

Junshuai Liu,Labor and Social Security Office of Qingdao, China

Kevin Huang Rufang, President of Chinese Organization for Rare Disorders,China

Manuel Posada, Director, Institute of Rare Diseases Research,ISCIII & President of ICORD. Spain

Meryem Nimour, MD, Vice President, Medical Affairs for Raredisease in Emerging Markets,Pfizer, USA

Mark J Pykett ,VMD MD,Presiden tand CEO,Agilis Biotherapeutics, USA

Mengchun Gong, MD, Executive Director,National Rare Disease Registry System,China

Peter L.Saltonstall, President and CEO,National Organization for Rare Disorders, USA

Qi Ming, Professor of foundation medicine, Zhe Jiang University School of Medicine, China

Rajakanth,Executive Director, Rainbow Across Border, Singapore

Renchi Yang, MD, Director,Institute of Hematology, Chinese Acedemy of Medical Sciences, China

Shuyang Zhang, Vice President,Peking Union Medical College Hospital,China

Stephen C.Groft, Pharm.Dm, Senior Advisor to theDirector, National Center for Advancing Translational Sciences, NIH,USA

Terence R. Flotte,MD,Editorin Chief, Human Gene Therapy,Dean of the School of Medicine,Provost and Executive DeputyChancellor, The Celia and Isaac Haidak Professor of Medical Education,University of Massachusetts Medical School, USA

Tao Duan, Professor, Chief Physician, Obstetrical Department,Shanghai First Maternity and Infant Hospital,China

Wenhao Zhou,Professor,Vice-President of Fudan University Pediatric Hospital, China

Xiaochun Liang, Professor, Director of Chinese Traditional Medicine, Peking Union Medical College Hospital,China

Yann Le Cam, Chief Executive Officer ,EURORDIS,France

Yukiko Nishimura,President/founder,NPO ASrid, Japan

Yiping Shen, Ph.D, FACMG,Dept. of Laboratory Medicine,Boston Children's Hospital, USA

Yaping Yang, Associate Professor, Baylor Medical College, USA

Zhicheng Jing,Professor, Chief of Scientific Research Department,Fuwai Hospital, China

Yicheng Zhu, Professor, Vice Director of Neurology, Peking Union Medical College Hospital,China

大会规模及参会者构成：