

China
Dong Dong
Dong is an assistant professor in the Jockey Club School of Public Health and Primary Care, Faculty of Medicine, Chinese University of Hong Kong.
She also is the principal investigator of the Rare Disease Real-World Data Lab at the Shenzhen Research Institute.
In 2014, Dong launched a long-term ethnographic study on patients and their families affected by rare diseases in mainland China. Her work has shown that these patients frequently lack equitable access to diagnosis, treatment, social care, and other opportunities.
Dong believes that data can help policy makers and the public grasp the scale of such problems, so in 2016 she initiated the General Social Survey of Patients with Rare Diseases in China (GSSPRD).
The GSSPRD has been conducted three times, and it will eventually become an open database that allows researchers and the public to explore the burden of diseases and other health care problems faced by rare disease patients in China.
Dong also is interested in migrant health issues, and she currently leads three major research projects on primary health care for South Asian migrants in Hong Kong. She is eager to collaborate with patient communities, scholars, and all stakeholders to raise the profiles of rare diseases in Asia.