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全世界人口的0.065%-0.1%是他们:白塞病、结节性硬化症、阵发性睡眠性血红蛋白尿症……生命同一个个佶屈聱牙的病名联结起来,每一张瞬间的背后是无数次相同的痛、悲伤与等待。这是一个让他们爱恨交织又无比留恋的世界,这是一个需要但还没有做好准备接纳与拥抱他们的世界。2014年2月27日,国际罕见病日,20个罕见病家庭纪实摄影展在北京展出,镜头下,“他们并不害怕等待,他们只是害怕没有希望的等待。”
0.065% -0.1% of the world’s population is that they are: Behcet’s disease, tuberous sclerosis, paroxysmal nocturnal hemoglobinuria ... ... life with the same name of a flexor fangs connected each moment The same pain, sadness and waiting countless times behind. It’s a world that loves, hates and nostalgia, a world that needs but is not yet ready to embrace and embrace them. On February 27, 2014, on the International Rare Day, 20 Rare Documentary Documentary Families of Rare Diseases were exhibited in Beijing. Under the lens, “They are not afraid to wait, they are just afraid of waiting without hope.” "