中国国家卫健委主任马晓伟于上周六表示,目前中国各类罕见病患者约有2000万人,相关防治亦存在问题,包括诊断能力不足、资源分配不均衡、药物缺乏、部分罕见病药价格偏高、药物研发创新能力低等;强调将推动医疗改革,做好罕见病防治工作。
马晓伟日前出席2020年中国罕见病大会时介绍,相关研究将推动临床医学科研突破,同时推进国家区域医疗中心建设、分级诊疗、健全药品供应保障制度等,提高全民健康。
他又指,当局已就问题展开改革,包括印发第一批罕见病目录,清晰界定罕见病的概念和病种范围;组建全国罕见病诊疗协作网,建立远程会诊制度;开展罕见病病例直报、发布罕见病诊疗指南并持续开展培训等,提高中国防治罕见病的能力。
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