About the Conference
2024 Global Rare Diseases Research Symposium & The Second China Rare Disease Research and Translational Medicine Annual Conference will be held in Shanghai, China from May 23rd to 25th, 2024. The conference is hosted by Hope for Rare Foundation, the International Rare Diseases Research Consortium (IRDiRC), and Fudan University, with National Children's Medical Center / Children's Hospital of Fudan University and Chinese Organization for Rare Disorders as the co-hosts.
The conference will last for 2.5 days with 21 parallel sessions and several satellite meetings. It will bring together over 100 speakers from global universities, hospitals, academic institutions, and pharmaceutical companies. Topics will cover basic research on rare diseases, gene and cell therapies, Investigator Initiated Trials (IIT), clinical studies, drug development, and international research collaborations. The conference will present the latest developments and original findings in rare diseases research, highlighting China’s contributions in the context of a global perspective.
Hosts
Hope for Rare Foundation was founded in Hangzhou, China in 2022 by Mr. Rufang (Kevin) HUANG in partnership with 11 well-known scientists and entrepreneurs. It is the first non-profit foundation in China to focus on rare diseases research and translational medicine. Its vision is to address the medical needs of all patients with rare diseases by leveraging resources and guiding innovative technology to advance the development of both basic and translational clinical research.
International Rare Diseases Research Consortium (IRDiRC) was established in 2011 under the initiative of the European Commission and the U.S. National Institutes of Health. The Consortium gathers 60 member organizations from all continents. By bringing together researchers, funders, and patient advocacy groups, IRDiRC promotes international collaboration in rare diseases research.
Fudan University was established in 1905 as Fudan Public School. It was the first institution of higher education to be founded by a Chinese person. Fudan is famous worldwide for its excellence and devotion in research. The diversity and professionality of the research across current 27 departments related to the science and medical disciplines, means that they not only seek for perfection in basic research but put the passion in translational research to make a different world as well.
Co-hosts
National Children's Medical Center / Children's Hospital of Fudan University, founded in 1952, is a Grade A tertiary Pediatric hospital integrating medicine, teaching, research, prevention and management, and was approved as the National Children's Medical Center in 2017. With strong medical strength and distinctive specialty features, it currently has 50 clinical and medical technical departments. It has established close collaboration with 26 internationally renowned medical institutions and has organized large-scale international academic conferences on pediatrics for many times.
The Chinese Organization for Rare Disorders (CORD), founded by Kevin HUANG in 2013, is a non-profit organization specializing in fields of rare diseases. CORD works to promote exchange and cooperation among rare disease patients and organizations, medical specialists, pharmaceutical companies and governmental agencies. It is committed to enhancing public understanding of rare diseases, improving patients’ access to orphan drugs, fostering formulation of rare disease policies, and initiating international exchange and cooperation.
大会简介
2024年5月23-25日，2024全球罕见病科研论坛暨第二届中国罕见病科研及转化医学大会将在中国上海举办。大会由瑞鸥公益基金会、国际罕见病研究联盟（International Rare Diseases Research Consortium，简称IRDiRC）、复旦大学主办，国家儿童医学中心复旦大学附属儿科医院、蔻德罕见病中心联合主办。
会议为期两天半，设有21个专场和若干卫星会，将邀请100余位来自海内外高校、医院、科研院所及医药企业从事罕见病基础与转化医学研究的讲者，围绕罕见病基础研究、基因与细胞治疗、研究者发起的临床试验（IIT）、临床研究、药物研发、国际科研合作等多个主题进行分享与交流，报告罕见病科研最新进展与原创性成果，展示罕见病研究的中国力量与国际视野。
主办方
瑞鸥公益基金会是国内首家专注于罕见病科学研究与转化医学的创新型公益基金会。基金会由 黄如方先生倡议并联合11位知名科学家和企业家共同发起创立。基金会的愿景是让罕见病患者 人人享有治疗，通过公益的力量，引领科技向善，成为推动罕见病科研和转化医学的创新引擎。
国际罕见病研究联盟（IRDiRC）是在欧盟委员会和美国国立卫生研究院的推动下，于2011年成立的。联盟汇集了来自全球五大洲的60个成员组织，通过将研究者、资助者和患者权益组织聚集在一起，促进罕见病研究的国际合作。
复旦大学成立于1905年，前身为复旦公学，是中国人创办的第一所高等教育机构。复旦以其对科研的卓越追求享誉世界。目前与科学和医学学科相关的27个院系在研究上的多样性和专业性，表明其不仅在基础研究方面寻求完美，而且将热情投入到转化研究中，以创造一个不同的世界。
联合主办方
国家儿童医学中心复旦大学附属儿科医院，创建于1952年，是集医、教、研、防、管为一体的三级甲等儿童专科医院。2017年获批国家儿童医学中心。医疗力量雄厚，专科特色鲜明，目前共设50个临床、医技科室。并与26家国际知名医疗机构建立密切协作关系，多次举办大型儿科国际学术会议。
蔻德罕见病中心，成立于2013年，由黄如方先生发起成立，是一家专注于罕见病领域的非营利性组织。蔻德致力于增进罕见病患者群体、罕见病组织、医学机构、医药企业和政府部门等各相关方的交流与合作，持续为患者社群孵化和赋能，加强社会公众对罕见病的了解，提高患者的药物可及性，推动医患交流及科研转化，开展罕见病领域国际交流合作，促进中国罕见病事业发展。
