The Survival and Medical Dilemma of Rare Disease Patients in the Greater Bay Area

Abstract

The population of rare disease patients in China faces many difficulties in disease diagnosis and treatment, medical security, economic burden, quality of life, social assistance, employment opportunities, mental health, and other aspects. It is of great significance to identify the common problems faced by this group and try to propose possible solutions, calling on all sectors of society to pay attention to the rare disease minority group, help them solve their survival and security difficulties, and enable more patients to return to society. This paper investigates and addresses the survival and security challenges faced by rare disease minority patients in the Guangdong-Hong Kong-Macao Greater Bay Area (GBA) of China. Through a survey of 223 rare disease patients in the Greater Bay Area, the study reveals that these patients face many challenges in diagnosis, treatment, drug access, and economic support. The conclusion emphasizes the necessity of improving diagnostic efficiency, accelerating drug development, and improving the medical insurance system. Thus, it further puts forward practical suggestions.