Rare diseases, despite their name, encompass a vast array of conditions, affecting a significant number of people worldwide. Over 10,000 distinct rare diseases have been identified, affecting around 10 percent of people worldwide,(1) with estimates suggesting 49 to 82 million sufferers in China alone.(2) The vast majority of rare diseases are genetic, and 90 percent lack effective treatment, posing challenges in diagnosis, treatment, and lack of standardized care.(3)
Peking Union Medical College Hospital (PUMCH) has become a leader nationally in advancing the study and treatment of rare diseases. Zhang Shuyang, MD, PhD, the first female president of PUMCH and concurrently vice president of the Chinese Academy of Medical Sciences and Peking Union Medical College, has played a pivotal role in establishing PUMCH’s preeminence in this field. For two decades, she has propelled China’s rare disease agenda forward through coordination with key stakeholders, leveraging resources, promoting new approaches to clinical diagnosis and treatment, and facilitating research and industry collaboration. Read more