罕见病防治意义重大

Rare disease treatment improves
罕见病防治意义重大

Rare disease drugs account for over half the first two batches of drugs eligible for a fast approval track targeting medications already approved overseas and in urgent need for Chinese patients, deputy director of the National Medical Products Administration Chen Shifei said on Saturday. "Compilation of the third and latest batch is coming to a close and is expected to be published soon," Chen said during the opening ceremony for the 2020 China Conference on Rare Diseases held in Beijing.
10月24日，“2020年中国罕见病大会”在北京举行。国家药监局副局长陈时飞出席大会并致辞时表示，已经遴选发布了两批临床急需境外新药评审的名单，其中罕见病治疗药品超过总量的50%，第三批评审名单的工作已经接近尾声，即将可以公布。

Ma Xiaowei, minister of the National Health Commission, said it is estimated there are about 20 million rare disease patients in China.
国家卫生健康委员会主任马晓伟表示，根据有关机构数据，我国有各类罕见病患者约2000万人。

The commission has released the country's first directory on rare diseases, set up a national cooperation network in diagnosis and treatment and promoted the use of a direct-reporting system, he said.
马晓伟说，国家卫健委印发了第一批罕见病目录，组建全国罕见病诊疗协作网，并开展罕见病病例直报。

However, he also noted China still faces a shortage of healthcare services and drugs available to rare disease patients, and weak capability in creating innovative drugs. To solve these problems, more efforts will be devoted to advancing a hierarchical medical system, strengthening drug supplies and deepening reform in the healthcare sector, Ma said.
在罕见病防治方面，我国仍然存在医疗资源不足、药物缺乏、药物研发创新能力低等问题，解决这些问题需要推进分级诊疗、健全药品供应保障制度、深化医疗保障制度改革。