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小毛病»内容 › 专业毛病交流› 渐冻症

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渐冻症

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全球约 3.5 亿人患病，却仍被称作「罕见」
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彩虹

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来源：丁香医生对于我们来说或许平平无奇，但对于罕见病患者来说，他们只有在一年当中的今天，才能被看见、被注意、被了解。即使全球已经有 3.5 亿的罕见病患者，而我国也有 2000 万之众。罕见病患者 ...

0 28805 7 0 2021-11-17 渐冻症
专访北航“渐冻症男孩”一家 ...2
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大海

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来源：央视新闻客户端9月19日，是北京航空航天大学2021级新生邢益凡18岁的生日，学校专门为邢益凡举办了生日会。 18岁，18公斤，渐冻症，在网络世界，邢益凡与这些关键词紧密相连。自从9月2日被父母用轮椅推进北航 ...

0 30842 14 0 2021-10-15 渐冻症
中国国家罕见病注册系统
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阿喵

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中国国家罕见病注册系统 (nrdrs.org.cn)

0 27410 2 0 2021-10-14 渐冻症
“"人民英雄”张定宇步履蹒跚背后，“渐冻症”你了解吗 ...2
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可乐

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习近平主席向“人民英雄”国家荣誉称号获得者张定宇颁发了奖章。疫情期间，步履蹒跚的他同时也在跟“渐冻症”作斗争。 9月8日上午10时，全国抗击新冠肺炎疫情表彰大会在北京人民大会堂隆重举行。习近平主席为国 ...

0 33090 11 0 2021-11-2 渐冻症
ALS——渐冻症
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大海

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[*]供稿：华中阜外医院急救站 [*]急诊科是医院的前沿阵地，是一个没有硝烟的战场。每天这里均要接待几十名甚至上百名的急诊患者，医护人员每天面对着生与死的搏斗和血淋淋的场面。作为实习生涯不可或缺的一站，在这 ...

0 27766 7 0 2021-10-15 渐冻症
我国有超过1600万罕见病患者！ ...2
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飞翔

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我国有超过1600万罕见病患者，平均诊断周期需要5年，目前仍有60%的患者未获得明确诊断。

0 46012 11 0 2021-5-12 渐冻症
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