2015年,国内接连不断的冰桶挑战活动让ALS群体(也就是俗称的渐冻人)逐步进入中国人的视野,也让更多人关注并了解这个群体。与渐冻人类似的群体还有很多,其中很多还被冠以美丽的名字,比如“月亮孩子”(白化症)、“不食人间烟火的孩子”(苯丙酮尿症)等。为了方便称呼这些拗口难记的疾病名称,国际上将其统称为罕见病。每个人都不愿生病,但如果不幸患上罕见疾病,患者又该如何面对?是自怨自艾,还是勇敢面对?是为自身疾病四处求医,还是 In 2015, a series of domestic ice bucket challenge activities gradually brought the ALS group (that is, commonly known as “cold-freezing people”) into the Chinese field of vision and let more people pay attention to and understand this group. There are many groups similar to those of people who are gradually getting cold, many of whom are also given beautiful names such as “Moon Kid” (albinism), “Kids Without Pygmy” (phenylketonuria), etc. . In order to facilitate the name of these hard-to-remember disease name, internationally referred to as a rare disease. Everyone is reluctant to get sick, but how can patients face it if they are unluckily suffering from rare diseases? Are they self-effacing or courageous? Are they seeking treatment for their own diseases or are they