有一个被称为“罕见病患者”的特殊人群,当普通人安享正常生活时,他们却时时忍受着病痛的折磨,陷入治疗难、就学难等人生困境。在社会公平、保障人权的时代语境下,社会应当如何关爱这一弱势群体?国家又该如何施以制度的援手?本刊特刊发相关调查报道,披露罕见病患者的生存状况,以及相关立法建议。 There is a special group of people who are called “rare patients.” When the ordinary people enjoy normal life, they often suffer the pain of affliction and fall into the difficult situation of treatment. How should the society care for this disadvantaged group in the context of social fairness and human rights protection? How should the state provide the system to help it? This special issue of special investigation report, the disclosure of the survival of rare patients, and related legislation Suggest.