Up to ten million people in our country suffer from the rare disease The deputy to the National People's Congress appeals for legislating to prevent and cure

Up to ten million people in our country suffer from the rare disease The deputy to the National People's Congress appeals for legislating to prevent and cure


Girl of Hong Kong albinism Chiu become a fashion model luckily ' Materials picture)
The statistics show, will present one " four leaf grasses " in 100,000 clovers ,Because is very rare, people regard it as luckily. Exist in the crowd around us too " Four leaf grasses " ,They suffer from rare disease, can not be treated because it is examined that the experience misdiagnose, leak, a lot of people stand the agony that serious illness bring every day. Compared with four leaf grasses in the nature, they are unfortunate, and helpless too.
Education sections of China Charity Federation, China health, Tsing-Hua University sponsored in Beijing not long ago " 2010 rare disease scientific seminars " Reveal: The rare disease patient of China nearly has the amount of ten million, are far higher than the tumour patient's the total number of person now in our country. Among them, 80% rare disease caused by hereditary defect, 50% rare disease or the intersection of children and one will have illness coming on when born in, and only 1% of the rare diseases have effective treatment medicines.
This seminar has also invited people from various circles such as medical science, law, ethics,etc., discuss together how to let the whole society pay close attention to the rare patient, let them have equal life right.

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