He Jiangjiang, Kang Qi, Hu Jiahao, Song Peipei, Jin Chunlin
Department of Health Policy Research, Shanghai Health Development Research Center, Shanghai Medical Information Center, Shanghai, China.
School of Public Health, Fudan University, Shanghai, China.
Intractable Rare Dis Res. 2018 May;7(2):145-147. doi: 10.5582/irdr.2018.01056.
Over the past few years, the Chinese Government has paid greater attention to rare diseases and it has incorporated rare diseases in national health strategy and planning. On May 22, 2018, the Chinese Government officially released its first list of rare diseases, which included 121 rare diseases. The list was published to facilitate greater societal awareness of rare diseases, to improve the ability of front-line medical staff to treat rare diseases, to introduce incentives for research and development of orphan drugs, and to increase the availability of medicines for rare diseases. This effort will enhance the management of rare diseases in China, raise the level of diagnosis and treatment for rare diseases, and safeguard the health-related rights and interests of patients with rare diseases. The classification of rare diseases is based on a common international standards, which will promote international cooperation in drug research and policymaking with regard to rare diseases.
在过去几年里，中国政府更加重视罕见病，并将罕见病纳入国家卫生战略和规划。2018年5月22日，中国政府正式发布了首批罕见病目录，其中包括121种罕见病。发布该目录旨在提高社会对罕见病的认知度，提升一线医务人员诊治罕见病的能力，出台孤儿药研发激励措施，并增加罕见病药物的可及性。这将加强中国对罕见病的管理，提高罕见病的诊断和治疗水平，保障罕见病患者的健康权益。罕见病的分类基于通用的国际标准，这将促进在罕见病药物研究和政策制定方面的国际合作。
