Rare disease patient nearly ten million of China Call upon the society to pay close attention to

Rare disease patient nearly ten million of China Call upon the society to pay close attention to
Cable of February 26 of Beijing of China News Service (reporter Zhang XiMin) The patient of China Mainland who suffers from the rare disease at present has been already up to nearly ten million people, the rare disease medicine has not included in the basic medicine catalogue yet at present, bring a certain influence to patient's treatment. Liu GuoLin, general secretary of China Charity Federation, calls upon the social love personage, volunteer, medical expert to try one's bit in order to improve the existence state of the rare disease crowd on the 26th. Liu GuoLin held here " The popular science propaganda activity of 2010th rare disease " Introduce at the news briefing, the popular science activity will last one month, will propagate the various forms of showing with popular science lecture, academy and policy discussing, rare disease patient's works etc. through the university, launch to rare propaganda of disease and popularize activity, this the intersection of China Mainland and the intersection of the first time and large-scale, directing rare the intersection of public service and propaganda activity of disease against for a long time too. It is introduced, rare disease means very low, rare disease of prevailing rate. At present, China does not have official definition to rare disease yet. There are rare diseases patients nearly ten million to calculate China according to the definition of World Health Organization and data of the other countries. Liu GuoLin says, in order to help the rare disease patient, under the circumstances that U.S.A. is strong in the subsidy of Zambia Company, China Charity Federation started formally in December of 2009 " China Charity Federation rare disease succour the intersection of public service and fund " . Fund this aim at, set up rare disease, succour core, work group and the intersection of volunteer and group, improve the social understanding to rare disease, the care to the rare disease patient of the society that appeal for, promote the rare disease patient to obtain sustainable medical guarantee. (End)

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