罕见疾病网络互助社区平台的构建探讨  

The Discussion about How to Build up Online Mutual Assistance Community Platform on Rare Disease

作　　者：刘晖[1] 朱祖余[1] 文旭[1] 吴秀珍[1] 

机构地区：[1]江西护理职业技术学院,江西南昌330029

出　　处：《中国卫生事业管理》2013年第3期176-177,共2页Chinese Health Service Management

基　　金：江西省卫生厅科技计划项目(编号:20122012)

摘　　要：介绍腹膜假性黏液瘤网络互助社区平台建立模式。弘扬全社会沟通、理解、互助、相互温暖的医学人文精神,并从医患互动、社会各层面参与中,推动罕见疾病治疗的进步。It introduces the model of building up online mutual assistance community platform on pseudomyxoma peritonei. It propagates some medical humanities＇spirit on making all the people communicate and understand well, even it gives more spirit on how to warm others＇heart and help each other. Meanwhile, it promotes the progress of the rare disease treament constantly from the doctor patient interaction and social level of paricipation.

关 键 词：网络互助社区平台 腹膜假性黏液瘤 罕见疾病 医学人文精神 

分 类 号：R197.1[医药卫生—卫生事业管理]