“罕见病”已经不罕见,伴着医疗条件的完善和提高,罕见病的筛查和治疗得到了进一步的提高。但是,社会和家长关注的焦点基本都停留在罕见病的治疗上,而对罕见病对患者本身造成的心理影响无暇顾及,尤其是一些在婴幼儿和儿童期发作的罕见病,罕见病不仅给儿童带了身体上的巨大痛苦,而且对他们的心理造成了终生的创伤。罕见病的治疗和减轻应该被关注,罕见病儿童的心理的健康发展更应该被关注。很有时候,可怕的不是疾病本身,而是缺乏面对和战胜疾病的信心。 “Rare disease ” is not uncommon, along with the improvement and improvement of medical conditions, screening and treatment of rare diseases has been further improved. However, the social and parents’ focus has been basically on the treatment of rare diseases. However, the psychological impact of rare diseases on the patients themselves is too late to be taken into consideration. In particular, some rare diseases that occur in infants and children, not only do rare diseases Children bring great physical pain, but also caused a lifetime of trauma to their mentality. The treatment and alleviation of rare diseases should be paid attention to, and the mental healthy development of children with rare diseases should be paid more attention. Sometimes it’s horrible not the illness itself, but the lack of confidence in facing and overcoming it.