Determinants and Equity Evaluation for Health Expenditure Among Patients with Rare Diseases in China.

Background: China has not established social security system for rare diseases. Rare diseases could easily impoverish patients and their families. Little research has studied the equity and accessibility of health services for patients with rare diseases in China.

Catastrophic expenditure and impoverishment of patients affected by 7 rare diseases in China.

Background: China is actively promoting regulation of rare diseases, rare disease and orphan drugs have been formally incorporated into the national planning. However, few studies have been done to evaluate the affordability of rare disease patients in China. This study aims to provide policy recommendations for the establishment of social security mechanism for rare diseases in China, so as to address the problem of poverty caused by these diseases.