To rare patient of concern, from raise the whole angle of race character up consider of, the society needs as to it's give enough care and love."China kind head quarter rare disease salvage office(next call to help office) performance director, Zhang Jian Hui, say to the reporter.WHO brings trouble the definition of rare disease the patient count have total number of populations 0.65%~1% diseases, China currently as to it's didn't°yet be explicit definition.Because the medicine(abroad call "orphan medicine") that cures a rare disease usually the price Be expensive and hard to acquire, be within the reach of sex and can pay sex to become a hard nut to crack, Zhang Jian Hui current work point of a, be help rare patient's acquires free treatment medicine, but only depend salvage office of strength, obviously entirely inadequate.But solution of the all these, then rely on a medical treatment guarantee the establishment of mechanism and its integration.Make people delighted BE, May 26, at is helped by municipal services in Shanghai to teach a section text a Wei body committee, 93 learn "build up a basic medical treatment of rare hereditary disease guarantee mechanism special subject seminar" that the agency Wei in Shanghai City holds in Shanghai up, vice- mayoral〃 Chen Xiao in Shanghai City means clearly, the end of this year or the beginning of next year, relevant the document that raises the rare disease prevention and cure level and builds up a rare disease basic guarantee mechanism or set.Develop is colder low than inside the outside heat 1% of fall ill the proportion make rare patient's become many small communities, the market demands is total smaller, and medicine development the cost is fixedly opposite, can be provided as the sample amount of research while developing a clinical trial at the same time also quite a little, with the result that the medicine of great majority rare disease probably can not take back development cost in the future sale, there is no business profits.The Jian great(Shanghai) living creature medicine consults Chinese government business of limited company and market quasi- say into director general Lin Bao Lian's introduction,cheap sunglasses according to the statistics data of the United States-made medicine industrial association(PMA), development with become available in the market the average cost of a new medicine attains USD 250,000,000, while the drugs developed to become available in the market to sell from the earlier period, the success rate in Europe is a 1/4317, the United States only is 1/6155, the new medicine permits to become available in the market not to mean the success of business at the same time.Under condition in the normal regulations market, make medicine business enterprise while drawing up new medicine research and the investment decision of development, market and profits contain decisive function.Therefore, few business enterprises would like to throw in energy in "orphan medicine" development.BE exactly according to the high risk present condition of "orphan medicine" development, many nations as to it's give support on the policy.Understand according to the reporter, Japan formally carried out 《the rare disease is used a medicine management system 》 in 1993, including the whole processeses of research could enjoy fund pecuniary aid, tax reduction, have the initiative examination and approval, drugs to discuss again to check time to prolong and the national health insurance pay the last special discount.FDA the United States also provides express line procedure for the registration of "orphan medicine", "orphan medicine" still possesses tax reduction and 7 years of to himself right in the market.On top of that, FDA definitely defined the concept of "alike medicine" and tried hard for to avoid an examination and approval to carry on the becoming available in the market of new medicine of simple change just on the member structure and protected the first market with this monopoly the benefits of, encourage a pharmaceutical factory development enthusiasm.Laws many special measure and traditional medicine development Zhi slow of the predicament urge to include a promise China and Ge orchid vegetable history gram, and Hui Rui...etc. the big pharmaceutical factory start paying attention to since the development of "orphan medicine", Ge orchid vegetable history gram exclusively for the set up one is engaged in a "orphan medicine" development of section, the Hui Rui then expected to pay the price code and an Israel living creature system medicine business enterprise of USD 60,000,000 to cooperate the development treatment Ge Xie Shi Bing's medicine taliglucerase before alfa.With of opposite should of BE, the domestic system medicine business enterprise is fresh to have a development enthusiasm.There is industry insider that mean, the domestic's cognition degree to the rare disease is still not enough, talk the development returns for lead early.Haven't had the rare disease of mainland the treatment medicine to become available in the market so far.On the other hand, although 《the new medicine registers a special examination and approval management rules 》 puts forward the medicine to the rare disease to practice a special examination and approval, because kit stipulates to lack, it results in the drugs of rare disease register still very difficult.The medicine is within the reach of the living creature product development process of sex not optimistic complications and a large amount ofly costs, and target treatment the number of crowds less, make the treatment medicine of rare disease the price is expensive.Currently, our country rare patient of treatment medicine basic dependence abroad import, frequently several treatment expenses of USD 100,000 general sufferer family have no the dint undertake.Introduce according to Zhang Jian Hui, with cure Ge thinking of Xie Shi Bing but great is example, a year of treatment expenses is about USD 200,000, the local sufferer has 134 currently is pass a rare disease salvage plan-think but the great charity present medicine item to acquire free medicine, but still have more other rare patient'ses because various reason can not acquire treatment medicine, being within the reach of of medicine with can pay sex still not optimistic.Is particularly importance to the prevention of rare disease under this circumstance, medical expert once to our country the prevention and cure work of the rare disease gave instruction opinion."First is promote the definition of rare disease , secondly for the rare sex hereditary disease, push understand, emphasize the exaltation of race character for having the prenatal period diagnosis the rare sex hereditary disease of method, expand diagnosis method, help the heredity of the medical personnel to the related personnel to consult, reduce baby patient birth risk;There is the rare sex hereditary disease of intervention method, expand intervention method, ease a condition, end, for have the special effect treatment the method, can save vital of rare sex hereditary disease, expand treatment method, appeal a social salvage, initiate a related and normal set."Zhang Jian Hui says.Guarantee mechanism Ji to treat sound for the prevention and cure of rare disease, its meaning far from and only stays around to on the sick list small public cluster of of care and love up.The more than 30 National Peoples Congress of Sun Zhao Qi, and Zhu Wei Fang...etc. represented to once jointly hand in a proposal and appealed to draw up 《rare disease prevention and cure method 》 quickly, and put forward to guarantee rare patient's include healthy power, fair of medical power at inside of each legal rights, dissolved a social antinomy, showed fair justice.The reporter understands and drew up at the earliest stage the United States of rare disease related law at it medical treatment guarantee the aspect also had detailed rules, it most of rare patient'ses passed the help of business insurance, healthy maintenance organization or is the government sponsors of the medical treatment cared plans to acquire "orphan medicine".The Brazil has brought "Ge Xie Shi Bing" into the catalogue that the federal submits an expense accounts since 2003, the Taiwanese region of our country then uses to the rare hereditary disease sufferer of special nutritional product expenses the enforcement whole sumses needed by medicine and maintenance life submit an expense account.Other medical expense press 70% of actual occurrence sum to pay.Also implement whole sumses to submit an expense account to the medical expense of the low income sufferer.Combine the circumstance of our country big parts of regions,Cheap RayBan Sunglasses Zhang Jian Hui said, should from individual, the medical insurance, and society salvage...etc. in many ways set up the medical guarantee embodiment of rare disease.For this, member of committee Li Ding Guo of Chinese People's Political Consultative Conference appeals and makes a definition of authority science to the rare disease quickly, set the medical treatment guarantee that set up a rare disease organization, build up reasonable of the medicine expenses of rare disease pay a mechanism and simplify the registration of the drugs of rare disease and usher in procedure and hand through a policyCang Ju Chi Luan anti-  the Zheng rush ∫┪ Lue  load  benzene  the ⒑ rush  "Fu Yu Ou head  Tiao  Geng  the ⒑ rush ∫┪ Liu poverty skirt Fu Zhuang Zhan  Yao  Di the Pi stir to rush  ∫ prize Ｒ┪ Cuo ㄏ Ke Ji punish  the  rush ∽ㄏ Fou  Shan Xing Huang ⒎ ü Biao  >Pai  Gao shrimp Ｊ form  Cai Mei Liang  the ⒑ rush ≈ the Wen repeatedly strive for Ｕ box  ping Tu cheek Tai Rong  tired ⒐ Mu  peach the Di stir aＯ exhibition  clean  Wo Die Tu ⒂ leak Di to strive for Ｏ Zhang cent 6 the miscellaneous Zhengs rush  "cheek E this load of ǚ joy Wei the ⒁ stir sparse ⒁ of aＵ to stir 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