罕見病防治意義重大

Rare Disease treatment improves

罕見病防治意義重大

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年中國罕見病大會”在北京舉行。國家藥監局副局長陳時飛出席大會並致辭時表示，已經遴選發佈了兩批臨牀急需境外新藥評審的名單，其中罕見病治療藥品超過總量的50%，第三批評審名單的工作已經接近尾聲，即將可以公佈。

Ma Xiaowei, minister of the National Health Commission, said it is estimated there are about 20 million rare disease patients in China.

國家衛生健康委員會主任馬曉偉表示，根據有關機構數據，我國有各類罕見病患者約2000萬人。

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.

馬曉偉說，國家衛健委印發了第一批罕見病目錄，組建全國罕見病診療協作網，並開展罕見病病例直報。

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.

在罕見病防治方面，我國仍然存在醫療資源不足、藥物缺乏、藥物研發創新能力低等問題，解決這些問題需要推進分級診療、健全藥品供應保障制度、深化醫療保障制度改革。