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 February 2018, he became a member of The Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease.
Chinese Organization for Rare Disorders (CORD), founded by Kevin Rufang Huang in 2013, is a non-profit organization specializing in fields of rare diseases. CORD works to promote exchange and cooperation among rare disease patients and organizations, medical specialists, pharmaceutical companies and governmental agencies. It is committed to enhancing public understanding of rare diseases, improving patients’ access to orphan drugs, fostering formulation of rare disease policies, and initiating international exchange and cooperation. www.raredisease.cn