国家罕见病直报系统
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国家罕见病直报系统总病例数已达164万例
Xin Jing Bao· 2025-09-22 02:58
Group 1 - The seventh China Rare Disease Conference recently opened in Beijing, highlighting the government's efforts in establishing a rare disease directory that includes 207 rare diseases [1] - The National Rare Disease Reporting System has covered all 31 provincial-level administrative regions and 236 prefecture-level cities, with a total of 1.64 million reported cases [1][2] - The number of hospitals participating in the national rare disease diagnosis and treatment collaboration network has increased from 324 in 2019 to 419 currently, with Peking Union Medical College Hospital leading the establishment of a multidisciplinary consultation platform [1] Group 2 - The National Medical Insurance Administration has established a three-tiered保障体系 (insurance system) consisting of basic medical insurance, major illness insurance, and medical assistance, with approximately 100 rare disease drugs included in the national medical insurance directory [2] - In 2024, the medical insurance fund will pay 8.6 billion yuan for rare disease drugs, accounting for 7.7% of the total payment for drugs during the agreement period [2] - The China National Rare Disease Registration System (NRDRS) has established 253 research cohorts covering 216 diseases, with over 90,000 registered cases and 105 clinical studies conducted [2]