Zhang Lijie
(b.1981) Photographer based in Beijing, China
The Rare / 罕•见

《被遗忘的少数》

/ 图文:张立洁 /



他们,作为少数,在大多数人的经验世界中,几乎不曾存在。但对于每一个承受病患的个体,却是真切而沉重的煎熬。他们,因身患某些罕见疾病,正身处被遗忘的困境。

罕见疾病简称“ 罕见病 ”,又称“ 孤儿病 ”。顾名思义,罕见病是指患病率很低、很少见的疾病。世界卫生组织WHO将罕见病定义为患病人数占总人口的0.65‰~1‰之间的疾病或病变。确认的罕见 病有5000~6000种,约占人类疾病的10%。按此比例,中国各类罕见病患者并不“罕见”,总数应有约150万,甚至更多。

强者和弱者、多数和少数的对抗贯穿于整个人类生存竞争的历史。作为少数,他们是失语的。一位名叫索克曼的基督教牧师曾经说:“当我们是少数的时候 ,可以测试自己的勇气 ;当我们是多数的时候 ,可以测试自己的宽容度。” 走到镜头前,就是他们对这个世界最努力的发声。


Started from 2009, this photography project focuses on people who have rare diseases in China. Who are they? How can they survive? What do they need? The society still paid no attention to those and has no idea what is a rare disease? Most of them struggle along on their own.

A rare disease (sometimes known as an orphan disease) has such a low prevalence in a population that a doctor in a busy general practice would not expect to see more than one case a year. WHO define rare disease as illness with 0.65‰-1‰rate. Accordingly, there should be more than ten million in China. But, unfortunately, misdiagnosis, lack of medicine, poverty and discrimination that they have been suffered were unknown.

This project aims to rouse people' understanding and attention, promote the government to solve their difficulties, give them more dignity to live or to die.



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© ZHANG Lijie 2016
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