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Kevin Huang, a rare disease patient himself, graduated from Zhejiang University City College. 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.

He is the editor of China Rare Disease Drug Accessibility Report 2019, How patient groups can promote orphan drug development – The global experience, China Rare Disease Healthcare Security City Report 2020.

In February 2018, he became a member of The Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease.

In November 2018, Kevin Huang won the UAE International Genetic Disease Prevention Award (2018).

In May 2019, Kevin Huang and the team won the DIA China Health and Wellness Outstanding Contribution Award.