中新健康丨专家:罕见病患者需医疗、教育、就业等多维度支持|国产精品激情
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中新网北京9月9日电(记者 赵方园)“教育拒收率从54%降至39%,完成本科及以上教育的患者比例从2019年的17.78%上升到2025年的19.46%;但仍有41%的患者仍无法入学,群体就业率不足一半。”日前,在“从罕见到无限”罕见病主题演讲中,北京病痛挑战公益基金会创始人、理事长王奕鸥分享了成骨不全症群体的最新调研数据。
数据的背后,是真实的生命困境。她举例:“许多刚刚开学的瓷娃娃此刻坐在课堂里,一整天不喝水,就是因为上厕所不方便”;一位中年病友对她说,“最怕的不是死,而是老后无人帮我翻身。”
因此,王奕鸥呼吁社会各界持续关心和帮助罕见病患者:推动教育包容,为罕见病患者提供更多无障碍设施与灵活的教育方式,保障其平等受教育权;创造更多适配的就业机会,拓宽其职业路径;建立更完善的保障体系,覆盖从医疗到养老的全方位支持,让罕见病患者有尊严地生活、无后顾之忧地老去等。
“从罕见到无限”罕见病主题演讲由北京病痛挑战公益基金会联合新华公益共同策划,活动邀请了七位来自医疗、公益、企业、患者社群等不同领域的演讲者,他们从生命叙事、医学探索、政策保障与社会创新等多个维度登台分享,呼吁公众关注罕见病群体,助力构建更加包容、温暖的社会环境。
北京协和医学院讲课教授、国家医保局医药服务管理司原司长熊先军,是业内公认的“老医保人”。退休前,他致力于解决罕见病患者的医疗保障问题。退休后,他拿起相机走访各地,用两年多时间,拍摄了上百位罕见病患者。
在接受中新健康采访时,熊先军坦言,罕见病患者急迫需求与政策漫长周期落差巨大,他希望社会关注成为企业回归谈判桌的推力,让全国统一的合理价格真正落地,实现患者、企业和医保的三方共赢。(完)
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