罕见病是指发病率低、比较少见的一类疾病.罕见病患者不仅个人身心痛苦,也给家庭及社会带来了沉重负担.当前我国罕见病患者在医疗服务、教育、就业、心理及社会保障等方面均面临着较大的问题.广泛、完善的社会支持对缓解上述问题具有重要作用.我国亟需从宏观、中观和微观3个层面来完善罕见病患者的社会支持系统,以缓解其面临的困境.%The mean of rare disease is the low incidence, more rare kind of disease. Rare disease brings not only personal physical and mental suffering, but also the family and the society's financial burden. The current country rare disease are facing greater problemin such as medical service, education, employment, psychological and social security. Widely perfect social support plays an important role in alleviating the problem. China should improve rare disease social support system to alleviate the difficult position from the macro, meso and micro levels.
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