皮肤罕见病团队工作进展与展望

Work Progress and Outlook of Rare Skin Diseases Team

皮肤罕见病种类繁多,诊疗研究相对匮乏。近年来,皮肤罕见病团队开展了一系列工作,包括牵头成立中国罕见病联盟皮肤罕见病专业委员会、建立中国首个皮肤罕见病专科医联体、启动2项全国性皮肤罕见病诊疗协作项目、推进中央专项彩票公益金支持罕见病诊疗水平能力提升项目、探索皮肤罕见病多学科诊疗模式、举办皮肤罕见病学术会议及编撰皮肤罕见病专业书籍等。未来,将进一步完善皮肤罕见病远程会诊模式,研发皮肤罕见病人工智能辅助诊断系统,开展高质量临床研究,提升中国皮肤罕见病的整体诊治水平,惠及更多患者。

There are many kinds of rare skin diseases,but the research into the diagnosis and treat⁃ment of rare skin diseases is relatively scarce.In recent years,the rare skin diseases team has made a series of accomplishments,including establishing the professional committee of Rare Skin Disease Committee of Chi⁃na Alliance for Rare Diseases,establishing China􀆳s first Medical Care Alliance for Rare Skin Diseases,launching two national collaborative projects,promoting the project of improving the diagnosis and treatment of rare diseases supported by the Central Special Lottery public welfare Fund,exploring the multidisciplinary diagnosis and treatment model of skin rare diseases,holding academic conferences,and compiling professional books on rare skin diseases.In the future,we will further improve the remote consultation model of rare skin diseases,develop artificial intelligence assisted diagnosis system of rare skin diseases,carry out high⁃quality clinical research,and improve the overall diagnosis and treatment level of rare skin diseases in China, for the sake of benefiting more patients.