The Hope for Rare Foundation was founded in Hangzhou, China in 2022 by Mr. Rufang (Kevin) HUANG in partnership with several renowned scientists and entrepreneurs. It is the first non-profit organization in China focusing 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 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.

“Good Faith Moves Mountains” is a research initiative launched by the Hope for Rare Foundation, dedicated to advancing personalized treatments for patients with rare diseases. The program is initiated and funded by patient families, with the Foundation leading efforts to unite experts and researchers from relevant fields to form a collaborative, cross-disciplinary team. We have seven on-going personalized treatment projects. The most advanced project is expected to enter the investigator-initiated clinical trial (IIT) in 2025. 

The Hope for Rare Foundation has established the Alliance for Scientific Innovation, bringing together stakeholders from industry, academia, research institutions, and patient advocacy groups to foster collaboration and maximize the effective use of resources.

Since 2022, the Hope for Rare Foundation has hosted the China Rare Diseases Research & Translational Medicine Annual Conference. The conference aims to foster international and domestic exchange in rare disease research and translational medicine, while serving as a collaborative platform for researchers, clinicians, and stakeholders across sectors.

The Chinese Organization for Rare Disorders (CORD) is the sister non-profit organization also founded by Kevin HUANG in 2013.

YouTube: https://www.youtube.com/@hope4rare/videos.

Hope for Rare Foundation

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