28日是国际罕见病日。由13个省的17家医学单位发起组成的我国首家罕见疾病全国性组织——中国罕见疾病防治联盟27日在山东济南成立。我国第一个关于罕见病防治的国家科研项目“中国罕见疾病防治研究与示范”同时启动。

28 is the international day for the rare disease.Launched by the 17 medical unit of 13 provinces of our country's first national group - China rare rare disease disease prevention and control of 27 league was set up in shandong jinan.China's first national research project on rare diseases prevention"China's rare disease prevention and control research and demonstration"At the same time start.

　　在我国，发病率低于万分之一、患病率低于50万分之一的疾病被定义为罕见病，目前已确认的罕见疾病有5781种。由于罕见病的发现、诊断水平较低，很多患者被长期误诊、漏诊，导致他们开始治疗时间较晚，病变不可逆转，造成终生遗憾。

In our country,Incidence of less than one over ten thousand/Prevalence of less than of a disease is defined as a rare disease,There are 5781 rare diseases have been confirmed.Because of the discovery of rare diseases/The low level of diagnosis,A lot of patients were misdiagnosed in the long run/In diagnosis,Cause they begin treatment time later,Irreversible lesion,Cause a lifelong regret.

　　中国罕见疾病防治联盟将致力于搭建罕见疾病防治平台和网络，建设一批罕见疾病诊疗中心，掌握我国罕见疾病流行病学现状，集中力量开展科技攻关、罕见疾病的科学普及和健康教育，提高我国罕见疾病防治水平。

China rare disease prevention and control of union is committed to building rare disease prevention and control platform and network,Construction of a group of rare diseases diagnosis and treatment center,To grasp the rare disease epidemiological situation in our country,Focus on science and technology research/Rare disease of popular science and health education,Raise the level of China's rare disease prevention and control.

　　中国罕见疾病防治联盟的发起单位之一的山东省医学科学院党委书记韩金祥说，罕见病属散发病，病种多，分布在医院的各个学科。由于缺乏登记上报机制，无法获得罕见疾病的临床转归、医疗状况等可靠数据，给流行病学研究、卫生政策制订带来了困难。专家分析，成立罕见疾病防治联盟，有助于罕见疾病资料的收集统计，开展流行病学研究，掌握疾病病谱，提高诊疗水平。(记者王海鹰)

One of China's rare alliance launched a unit for disease control and prevention said Han Jinxiang party secretary of shandong academy of medical sciences,Rare disease is a disease,Disease to many,Each discipline of distribution in hospital.Due to lack of registration report mechanism,Don't have access to rare diseases clinical outcomes/Medical conditions such as reliable data,Epidemiological studies/Health policy formulation has brought difficulties.Expert analysis,A rare disease prevention coalition,Help to rare disease data collection statistics,To carry out epidemiological studies,Master the disease spectrum,Improve the level of diagnosis and treatment.(The reporter Wang Haiying)