中新网济南2月21日电 题：全国政协委员彭军：从罕见病到就医体验 心系"急难愁盼" 作者 李明芮 祁建月 "怎样真正帮到罕见病患者？"这是全国政协委员、民盟中央委员、山东大学齐鲁医院副院长彭军履职过 程中，始终萦绕心头的问题。 患做检查。受访者供图 今年全国两会前夕接受中新网专访，他再次提到这一群体。"罕见病虽称'罕见'，关乎每一个患者家庭 的完整与希望。"作为血液科医生，彭军坚守临床30余年，接诊过很多罕见病患者。这个群体尤其是贫 困家庭患儿，是他履职路上放不下的牵挂。 此外，罕见病患者在生活中还面临诸多不便，在入学、就业等多环节仍会遭遇阻碍，成为需重点关注的 弱势群体。"这些孩子、这些家庭，值得被世界温柔以待。"彭军说。 在各界共同努力下，彭军的提案逐步落地，罕见病保障工作迎来积极变化。国家卫健委、国家医保局等 部门多次主动与他电话沟通，征求关于罕见病诊疗与保障工作的意见建议。 彭军为病 生交流探讨。李明芮 摄 "2024年，有15种罕见病用药被新纳入国家医保目录。这对罕见病家庭来说，是实实在在的好消息。"彭 军举例说，治疗阵发性睡眠性血红蛋白尿的特效药依库珠单抗，在纳入医保前，患者每年自付费用达 300 ...

Core Insights - Approximately 100 rare disease medications have been included in the national medical insurance drug list, reflecting a significant advancement in the treatment and support for rare disease patients in China [1][2][3] Group 1: Medical Insurance and Coverage - The national medical insurance drug list now covers medications for 42 types of rare diseases, with a projected payment of 8.6 billion yuan for rare disease medications in 2024, accounting for 7.7% of total drug payments during the agreement period [1] - The establishment of a multi-layered insurance system, including basic medical insurance, critical illness insurance, and medical assistance, is underway to enhance support for rare disease patients [1][4] Group 2: Research and Innovation - The development of a comprehensive support network for rare diseases includes advancements in drug research, rapid review processes, and the establishment of a dual-channel supply mechanism for medications [2] - Significant breakthroughs in rare disease treatments have been achieved, with examples of previously untreatable conditions now having available medications that are also covered by insurance [2][3] Group 3: Global Contribution and Collaboration - China is emerging as a key player in the global discourse on rare diseases, having established a reporting system covering 1.15 billion people and registering 1.64 million cases [3] - The country has led initiatives at the World Health Assembly regarding rare diseases, showcasing its commitment to global health governance [3] Group 4: Social Support and Community Engagement - Various government departments and social organizations are collaborating to enhance care for rare disease patients, with initiatives aimed at improving accessibility and support [4] - Hospitals are implementing patient-friendly measures, such as placing rare disease clinics on the ground floor and ensuring lifelong follow-up care for patients [4]