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.

大會(huì)簡(jiǎn)介

? ? ? ? ? ?2024年5月23-25日，2024全球罕見病科研論壇暨第二屆中國(guó)罕見病科研及轉(zhuǎn)化醫(yī)學(xué)大會(huì)將在中國(guó)上海舉辦。大會(huì)由瑞鷗公益基金會(huì)、國(guó)際罕見病研究聯(lián)盟（International Rare Diseases Research Consortium，簡(jiǎn)稱IRDiRC）、復(fù)旦大學(xué)主辦，國(guó)家兒童醫(yī)學(xué)中心復(fù)旦大學(xué)附屬兒科醫(yī)院、蔻德罕見病中心聯(lián)合主辦。

會(huì)議為期兩天半，設(shè)有21個(gè)專場(chǎng)和若干衛(wèi)星會(huì)，將邀請(qǐng)100余位來自海內(nèi)外高校、醫(yī)院、科研院所及醫(yī)藥企業(yè)從事罕見病基礎(chǔ)與轉(zhuǎn)化醫(yī)學(xué)研究的講者，圍繞罕見病基礎(chǔ)研究、基因與細(xì)胞治療、研究者發(fā)起的臨床試驗(yàn)（IIT）、臨床研究、藥物研發(fā)、國(guó)際科研合作等多個(gè)主題進(jìn)行分享與交流，報(bào)告罕見病科研最新進(jìn)展與原創(chuàng)性成果，展示罕見病研究的中國(guó)力量與國(guó)際視野。

主辦方

? ? ?瑞鷗公益基金會(huì)是國(guó)內(nèi)首家專注于罕見病科學(xué)研究與轉(zhuǎn)化醫(yī)學(xué)的創(chuàng)新型公益基金會(huì)。基金會(huì)由?黃如方先生倡議并聯(lián)合11位知名科學(xué)家和企業(yè)家共同發(fā)起創(chuàng)立。基金會(huì)的愿景是讓罕見病患者 人人享有治療，通過公益的力量，引領(lǐng)科技向善，成為推動(dòng)罕見病科研和轉(zhuǎn)化醫(yī)學(xué)的創(chuàng)新引擎。

? ? ?國(guó)際罕見病研究聯(lián)盟（IRDiRC）是在歐盟委員會(huì)和美國(guó)國(guó)立衛(wèi)生研究院的推動(dòng)下，于2011年成立的。聯(lián)盟匯集了來自全球五大洲的60個(gè)成員組織，通過將研究者、資助者和患者權(quán)益組織聚集在一起，促進(jìn)罕見病研究的國(guó)際合作。?

? ? ?復(fù)旦大學(xué)成立于1905年，前身為復(fù)旦公學(xué)，是中國(guó)人創(chuàng)辦的第一所高等教育機(jī)構(gòu)。復(fù)旦以其對(duì)科研的卓越追求享譽(yù)世界。目前與科學(xué)和醫(yī)學(xué)學(xué)科相關(guān)的27個(gè)院系在研究上的多樣性和專業(yè)性，表明其不僅在基礎(chǔ)研究方面尋求完美，而且將熱情投入到轉(zhuǎn)化研究中，以創(chuàng)造一個(gè)不同的世界。

聯(lián)合主辦方

? ? ? 國(guó)家兒童醫(yī)學(xué)中心復(fù)旦大學(xué)附屬兒科醫(yī)院，創(chuàng)建于1952年，是集醫(yī)、教、研、防、管為一體的三級(jí)甲等兒童?？漆t(yī)院。2017年獲批國(guó)家兒童醫(yī)學(xué)中心。醫(yī)療力量雄厚，專科特色鮮明，目前共設(shè)50個(gè)臨床、醫(yī)技科室。并與26家國(guó)際知名醫(yī)療機(jī)構(gòu)建立密切協(xié)作關(guān)系，多次舉辦大型兒科國(guó)際學(xué)術(shù)會(huì)議。

? ? ?蔻德罕見病中心，成立于2013年，由黃如方先生發(fā)起成立，是一家專注于罕見病領(lǐng)域的非營(yíng)利性組織。蔻德致力于增進(jìn)罕見病患者群體、罕見病組織、醫(yī)學(xué)機(jī)構(gòu)、醫(yī)藥企業(yè)和政府部門等各相關(guān)方的交流與合作，持續(xù)為患者社群孵化和賦能，加強(qiáng)社會(huì)公眾對(duì)罕見病的了解，提高患者的藥物可及性，推動(dòng)醫(yī)患交流及科研轉(zhuǎn)化，開展罕見病領(lǐng)域國(guó)際交流合作，促進(jìn)中國(guó)罕見病事業(yè)發(fā)展。