【摘要】 目的 加强罕见病患者合理用药管理，提高用药综合保障水平，以解决罕见病用药痛点问题。方法 借助移动信息化技术，开发广东短缺药品咨询平台应用程序，并建立罕见病患者智慧化多功能的药学信息服务。结果 作为中国首个整合省级罕见病医药资源的大数据平台，通过建立完善、专业的罕见病移动式药学服务体系，创新性实现线上线下“医+药+患”三方闭环。结论 该药学服务平台为罕见病患者搭建起寻医找药的桥梁，助力健康中国高质量发展。更多还原

【Abstract】 Objective To strengthen the management of rational medication for patients with rare diseases and improve the level of comprehensive medication support, in order to address the pain points in medication for rare diseases. Methods By leveraging mobile information technology, a mobile application for the Guangdong Shortage Drug Consultation Platform was developed and a smart and multifunctional pharmaceutical service information platform for rare disease patients was established. Results As the first big data platform in China integrating provincial-level rare disease medical resources, it innovatively realizes the closed-loop interaction among "treatment to medication" online and offline by establishing a comprehensive and professional rare disease mobile pharmaceutical service system. Conclusion The pharmaceutical service platform builds a bridge for rare disease patients to seek medical treatment and and medicine, and helps promote the high-quality development of Healthy China strategy.更多还原