让“罕见”被看见——医学图书馆的罕见病资源建设与信息服务探析

Let ′Rare Disease′ Been Seen: Delving into the Building up of Resource and Information Service in Medical Libraries for Rare Diseases

摘要: 随着中国罕见病诊疗事业的发展和高等学校“双一流”建设的持续推进，医学高校图书馆应发挥特长优势，主动迎接学科建设带来的新挑战。本文梳理国内外医学图书馆开展的罕见病相关资源建设和信息服务实践，对今后可开展的资源信息建设进行探讨，以期扩大医学生、科研工作者和社会公众对罕见病的知晓率，加强对罕见病的教学科研支持力度，为进一步提升中国罕见病诊治和教育研究的整体水平作出应有贡献。

Abstract: With the development of the diagnosis and treatment for rare diseases and the promotion of the construction of ′Double First-Class′ Universities in China, the libraries of medical schools have to make full use of their strengths to better face new challenges in discipline construction proactively. This article refers to resource and information service practices related to the rare disease carried out by medical libraries in China and in other countries; explores the possibilities of building up the resource and information in the future, aiming at improving the awareness of rare diseases among medical students, researchers, and the general public. The article also focuses on the need for strengthening the support for teaching and research into rare diseases, hoping to contribute to the overall improvement of the diagnosis, treatment, and educational research in rare diseases in China.