Abstract:Study on Medical Security of Patients with Rare Diseases in Fujian WU Bin, LUO Ren-xia, CAO Jian-pin, et al. Department of Epidemiology and statistics, Fujian Medical University,Fuzhou,Fujian,350004,ChinaAbstract Objective:To investigate the medical security of patients with rare diseases in Fujian, in order to provide references for establishing medical security policy for rare diseases. Methods: The information of 386 cases with rare diseases were surveyed. Results: The average annual medical cost is 109,000 yuan, maximum cost was 2.2 million yuan. Most of people with rare diseases had encountered difficulties during treatment. The main reasons is high treatment cost (57.7%). The average self-pay part of annual medical cost is 53,000 yuan. The self-pay part exceeded 40% of family annual income in 76.9% cases. The self-pay part exceeded family annual income in 33.4% cases. Conclusion: The treatment costs of rare disease shall be included in the scope of medical insurance, to help rare disease patients be treated, to reduce the burden on the personal medical expenses of patient.