HOPE FOR RARE FOUNDATION
The 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 disease research and translational medicine. Our vision is to address the medical needs of patients with rare diseases through leveraging resources and guiding innovative technology to advance the development of both basic and translational clinical research.

The characters, “Rui Ou” 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.
INNOVATIVE ENGINE FOR ADVANCING RARE DISEASE RESEARCH AND TRANSLATIONAL MEDICINE
Vision
To advance the care of patients with rare diseases
Mission
To be a driver of innovation in rare disease research and translational medicine
Approach
Platforms,Sponsorship,Innovation
Co-Founders
Xiaochun CAO
Co-Founder, Executive Director & General Manager, Tigermed
Wende CHEN
Chief Operation Officer, Genor Biopharma
Tao DUAN
MD, PhD
Professor of Obstetrics and Gynecology
Former Director, Shanghai First Maternity and Infant Hospital of Tongji University
Kevin HUANG
Founder & President,Chinese Organization for Rare Disorders
Oudong PAN
Founder & Chairman, OBiO Technology
Eric SHAO
VP & GM Commercial Solutions, Greater China, IQVIA
Shawn XIANG
PhD
CEO, RareStone Group
Xiao XIAO
PhD
Co-Founder,President & CSO,Belief BioMed
Tian XU
PhD
Chair Professor of Genetics & Vice President, Westlake University
Zhiyu YAN
Co-Founder, Chairman & CEO, Sperogenix Therapeutics
Paul ZHANG
PhD
Founder & Chairman, MedSci and Bioon
Honghao ZHOU
Member of the Chinese Academy of Engineering
Director, Institute of Clinical Pharmacology at Xiangya Hospital, Central South University
PROJECT COOPERATION
2022 The First China Rare Disease Research and Translational Medicine Annual Conference
The Rare Disease Research and Translational Medicine Conference, organized by the Hope for Rare Foundation in 2022, aims to build a multi-disciplinary platform to facilitate communication and collabration among academia, industry, and business entities for rare disease research and translational medicine. The first conference will be held at Hangzhou Future Sci-Tech City in November 2022.
Alliance for Scientific Innovation for Rare Diseases
The Hope for Rare Foundation has set up the Alliance for Scientific Innovation comprised of representatives from industry, academia, research institutions, and patient advocacy groups to promote collaboration and efficacious resource utilization.
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.