HOPE FOR RARE FOUNDATION
The Hope for Rare Foundation was founded in 2022 by Kevin Huang in partnership with several renowned scientists and entrepreneurs. It is the first nonprofit foundation focusing on scientific research and translational medicine of rare diseases in China. Our vision is to advance the care of ALL patients with rare diseases, and our mission is to become an Innovation Engine for advancing rare diseases research and translational medicine.
The foundation’s Chinese name, “瑞鸥”, are derived from the pronunciation of “Rare”. It symbolizes the propitious and powerful spirit of the seagull, the emblem of the Foundation.
The foundation’s Chinese name, “瑞鸥”, are derived from the pronunciation of “Rare”. It symbolizes the propitious and powerful spirit of the seagull, the emblem of the Foundation.
Why We Do?
There are more than 7,000 rare diseases. Unfortunately, there are only 600 approved therapeutic medications available worldwide, which treat a mere 6% of rare disease. Almost none of those orphan drugs were independently discovered, developed, and approved by China. Patient groups and foundations drive one third of the early research into orphan drugs. As the first Chinese foundation dedicated to rare disease research and translational medicine, the Hope for Rare Disease Foundation with our partners aim to enhance investments in basic and translational clinical research to advance the care and cure for patients with rare diseases around the world.
Innovation Engine For Advancing Rare Diseases Research And Translational Medicine
Vision
To advance the care of ALL patients with rare diseases
Mission
To become an Innovation Engine for advancing rare diseases research and translational medicine
Approach
Platforms, Sponsorship, Innovation
A Tiny Wish
SCIENTIFIC ADVISORY BOARD
Wai-Yee Chan
Pro-Vice-Chancellor/Vice President, The Chinese University of Hong Kong
Wendy Chung
Chief of the Department of Pediatrics of Boston Children’s Hospital / Harvard Medical School
Terence R. Flotte
Provost, Dean and Executive Deputy Chancellor of the UMass Chan Medical School
President, American Society of Gene & Cell Therapy
President, American Society of Gene & Cell Therapy
Fen-Biao Gao
Chief of Medical Genetics, Yale University School of Medicine
Guangping Gao
Director, Li Weibo Institute for Rare Diseases Research at UMass Medical School
Past President of the American Society of Gene & Cell Therapy
Past President of the American Society of Gene & Cell Therapy
Min-Xin Guan
Director, Institute of Genetics, Zhejiang University
Yong-Hui Jiang
Chief of Medical Genetics, Yale University School of Medicine
Li Jin
Academician of Chinese Academy of Sciences President of Fudan University
Peng Jin
Chair, Department of Human Genetics, Emory University School of Medicine
Xiao-Jiang Li
Professor, Guangdong-HongKong-Macao Institute of CNS Regeneration, Jinan University
Harvey F. Lodish
Founding member of the Whitehead Institute, Massachusetts Institute of Technology
Member, National Academy of Sciences, US
Member, National Academy of Sciences, US
David Pearce
Chair of International Rare Disease Research Consortium
Adam Resnick
Director, Center for Data Driven Discovery in Biomedicine at the Children’s Hospital of Philadelphia
Daniel Scherman
Director, French Foundation for Rare Diseases Head of the Medicine and Life Science Division of the European Academy of Science
Yi Wang
President of the National Children's Medical Center / Children's Hospital of Fudan University
Janet Woodcock
Former Principal Deputy Commissioner of the U.S. Food and Drug Administration
Member of Board of Directors, Every Cure
Member of Board of Directors, Every Cure
International Collaboration for Rare Disease
We actively seeks to partner with international researchers, biotech companies, and advocacy
organizations to co-develop personalized, science-driven solutions and improve global access to innovative
treatments. By leveraging China’s large patient base, clinical infrastructure, and growing expertise in
translational research, we to serve as a bridge between global innovation and local unmet needs.
Five fundamental pillars of rare disease research and translation in China collectively drive
progress in this field
PROJECT COOPERATION
2024 Global Rare Diseases Research Symposium & The Second China Rare Diseases Research and Translational Medicine Annual Conference (HRSC)
Hosted by Hope for Rare Foundation, IRDiRC, and Fudan University
159 speakers from 20 countries across 4 continents
1680 registered attendees from 25 countries across 6 continents
20 main topics, including special topics on investment, international cooperation, and patient organizations
159 speakers from 20 countries across 4 continents
1680 registered attendees from 25 countries across 6 continents
20 main topics, including special topics on investment, international cooperation, and patient organizations
Scientific Innovation Alliance for Rare Diseases
The Hope for Rare Foundation has set up the Alliance for Scientific Innovation, comprised of representatives from industry, academia, research institutes, and patient advocacy groups, to promote collaboration and effective resource utilization.
Good Faith Moves Mountains Project
Research Project Initiated by rare disease patient group program is aresearch program aimed to provide individual medical treatment to raredisease patient. The program is initiated and financed by patient families.lead by Hope For Rare Foundation and joint with experts and researchersfrom related domain.
The New Year's Charity Banquet
The New Year's Charity Banquet is an annual fund-raising event, organized by the Hope for Rare Foundation. Its purpose is to provide a social interaction opportunity for philanthropists, entrepreneurs, government officials, celebrities, care providers, media, and individuals Who share a passion for life sciences and improving outcomes for rare diseases.