“罕见病”(OrphanDiseases),是指威胁到生命的或者非常严重的一些疾病,但患病者的数量却很有限。这些疾病通常比较少见,因此要得到正确的诊断通常要花很长一段时间,而一旦确诊后,病人会发现他们的医生可能缺少这种疾病的治疗知识或经验。即使那些专业的医生通常也会缺少合适的 Orphan Diseases, which are life-threatening or very serious illnesses, are limited in number. These diseases are usually rare, so getting a correct diagnosis usually takes a long time, and once diagnosed, patients may find that their doctor may lack the therapeutic knowledge or experience of the disease. Even those professional doctors often lack the proper fit