China Issues Second List of Rare Diseases

On September 18, China’s National Health Commission (NHC) released its second list of rare diseases. This list includes 86 rare diseases including Giant Cell arteritis, Gorlin Syndrome, Fragile X Syndrome, etc. For a complete list, please click here.

It is estimated that China has over 20 million people with rare diseases. In 2018, the “Compendium of China’s First List of Rare Diseases” of 130 rare diseases was issued. In 2019, China initiated the National Network to Collaborate on Diagnosis and Treatment of Rare Diseases. This Network included over 300 hospitals and over 30 provincial institutions to enable rare disease information collaboration. The development and reimbursement of rare diseases in China is a large government initiative now.


Written by: Ames Gross – President and Founder, Pacific Bridge Medical (PBM)
Mr. Gross founded PBM in 1988 and has helped hundreds of medical companies with regulatory and business development issues in Asia. He is recognized nationally and internationally as a leader in the Asian medical markets. Mr. Gross has a BA degree, Phi Beta Kappa, from the University of Pennsylvania and an MBA from Columbia University.

Source used in the article: http://english.nmpa.gov.cn/2023-09/21/c_924353.htm#:~:text=BEIJING%20%2D%2D%20Chinese%20health%20authorities,including%20hematology%2C%20dermatology%20and%20pediatrics.