75%罕见病治疗不规范 75% of rare disease treatment

　　目前75%的罕见病治疗不规范，44%的罕见病存在误诊，有的罕见病确诊要辗转5至10位医生，耗时达到30年……今天上午，北京医学会罕见病分会成立，来自北京地区的十多家医院和科研院所的专家教授开始共同致力于推动罕见病医疗水平的提高和保障措施的完善。

Currently 75% of the rare disease treatment is not standard,44% of the rare disease misdiagnosis exists,Some rare disease diagnose to toss 5 to 10 a doctor,Take up to 30 years...This morning,Beijing medical association rare disease branch established,From Beijing region of more than ten hospitals and research institutes of the expert professor began to devote ourselves to promote rare disease medical and raising the level of the improvement of the safeguard measures.

　　在我国将患病率低于五十万分之一的疾病称为罕见病，80%的罕见病由于遗传缺陷所致，目前全球范围内已确认的罕见病种约5000多种，占人类疾病的10%左右，我国罕见病患者已达1680万，罕见病患者并不罕见。

In our country will rates less than one over five hundred thousand of the disease called rare disease,80% of the rare disease due to genetic defect,At present the global scope has been confirmed about 5000 kinds of rare diseases,Accounts for about 10% of the human disease,China rare disease has reached 16.8 million,Rare disease is not rare.

　　但是在我国，罕见病治疗还存在治疗方法少、治疗药品少、引进无动力、支付渠道困难、社会认知度低等困境。北京医学会金大鹏会长表示，罕见病防治还需要健全的法规体系、积极的激励机制、活跃的民间团体。(记者 孙颖)

But in our country,Rare disease treatment still has less treatment/Treatment drugs less/Introduce no power/Pay channels difficult/Social awareness lower dilemma.Beijing medical association JinDaPeng President says,Rare disease prevention and control also need to improve the regulatory system/Positive incentive mechanism/Active civil society.(Reporter SunYing)