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4. Funded Research Projects

world have policies in dealing with the problem. China is not one of them. This

proposed research is the first scientifically designed survey study in China that
attempts to identify and explore the socio-medical conditions of people living
with rare diseases. Oriented from a Community–Based Participatory Research

approach, the researcher will collaborate with five rare disease patients groups

and one national rare disease NGO to design and conduct the survey. The study
will use a respondent-driven sampling method that can provide relatively
scientifically estimated conditions of the rare disease patients and their families.

By looking into five rare diseases, this study can also be used as a basis for future
surveys on more rare diseases and at a larger scale. The long-term objective of

the study is to create a socio-medical baseline for the preparation of developing
a rare disease policy in China.

4.20 Live to Contend: The Emergence and Development of the
Health Rights Defence Movement in Contemporary

China (on-going project)

Principal Investigator: Dr. Dong Dong

Research Assistant Professor, Environment, Health
and Sustainability Working Group of LEWI

Source of Funding: Chiang Ching-kuo Foundation for International
Scholarly

Amount Awarded: HKD655,200

Brief Introduction:

This study is the first academic attempt to investigate the health rights defence
movement in contemporary China. The right to health is one fundamental part of
human rights. However, in the People’s Republic of China, the right to health is

often regarded as secondary to economic development and social stability.
Harmed by the malfunctioning health care system and disappointed by the

difficulties in seeking justice through the legal system, Chinese citizens have
gradually developed consciousness of health rights and coalesced into a social

movement. This movement is one integral part and a forceful dimension of the
burgeoning Chinese civil society. Through the theoretical lens of issue

entrepreneurship, this study will look into the issues that Chinese health rights
defenders strategically create, frame, and bring into the public arena. Drawing

45 HONG KONG BAPTIST UNIVERSITY | David C. Lam Institute for East-West Studies