희귀유전질환심포지엄조직위원회
Rare Genetic Disease Symposium Organizing Committee
PROFILE
Kevin Huang Founder/CEO
Exploring the Uncharted: Research Grants by Hope for Rare Foundation
Rare disease patient organizations in China are moving from patient support toward patient empowerment, policy engagement, improving diagnosis and access, and becoming partners in research and innovation.
中国罕见病患者组织从“患者互助”走向“患者赋能、政策参与、诊疗推动、药物可及和研发合作”。
Hope For Rare Foundation/
Chinese Organization for Rare Disorders(CORD)
EDUCATION
graduated from Zhejiang University City College.
PROFESSIONAL EXPERIENCE
He is the founder and president of Chinese Organization for Rare Disorders. He was also the one who brought the International Rare Disease Day to China. Through his work, rare disease is now widely known in China. Kevin has also been a champion promoting communications and facilitating
collaborations among various rare disease stakeholders. He founded the China Rare Disease Patient Organization Network; and started the China Rare Disease Summit – the most influential rare disease conference in China. He is the pioneer and practitioner and has become an iconic figure in the field of rare disease in China.
In 2021, he initiated and founded the Golden Snail Award, the first award of rare diseases community in China.
In 2022, he joins hands with several scientists and entrepreneurs to launch the Hope for Rare Foundation.