Ministry of Civil Affairs plans to include rare disease in succouring the system charitably this year

Ministry of Civil Affairs plans to include rare disease in succouring the system charitably this year
Ministry of Civil Affairs plans to include rare disease in succouring the system charitably this year
It is reported (reporter Cara Wang) Today, it is international rare disease day. February 26, the activity that departments such as the education sections of China Charity Federation, China health,etc. jointly launched rare disease propaganda month of popular science of this year, this is so large-scale directing against the rare disease for a long time a public service propaganda activity of start for the first time of area of continent of our country. China Charity Federation introduces, World Health Organization defines rare disease as the ill number of people and accounts for 0.65% of total population. To 1%. During disease or pathological change, including gristle disease, albinism, law cloth diseases auspicious,etc.. There are 5000 to 6000 kinds of rare diseases already confirmed at present, nearly 80% of the rare diseases are caused by hereditary defect, have 50% rare disease when born in nearly and the intersection of children and one can have illness coming on, only about 1% of the rare diseases have effective treatment medicines. China Charity Federation rare disease succour the intersection of office and piece, build intelligent to point out because the morbidity is very much low, rare disease has been ignored by health organ, medical enterprise and various circles of society of our country all the time. There is no official definition of the rare disease yet in the area of continent of our country at present. Estimate according to the rare disease morbidity and number of people that the other countries suffer from the rare disease that World Health Organization define, our country nearly has patients to exceed ten million people. The activity lasts one month this rare disease propaganda month of popular science, through forms such as the lecture, discussing,etc., popularize the activity to the knowledge of the rare disease. The activity will come into Peking University, campus of Tsing-Hua University at first. At present, our country have society pay close attention to the fact degree to be low and treating the higher problem of competence to rare disease at home, but the good news from Ministry of Civil Affairs is, plan to bring serious disease including rare disease into succouring charitably in the system this year. The host calls upon, improve the existence state of the rare disease crowd in China, improve the concern about the rare disease patient of various circles of society, help them to obtain sustainable medical guarantee. -3 million expenses for medicine of every year of story maintain the life 22 -year-old Liu Chao (assumed name) It is the rare dagger-axe that thanks a disease patient, the symptom is that a stomach is big like pregnant woman, abdominal pain, bone-ache, anaemia,etc.. Half-time of a year old, Liu Chao presents the symptom, at the age of 3, it is difficult for him to already walk, bellied. He tosses about in bed in the hospitals in all parts of the country with parents, but is told " there are not medicines in our country of this kind of disease " . Liu Chao 6 that year such as year old, mother of him learn U.S.A. good for the intersection of Zambia and Company have, treat dagger-axe, thank medicine of disease, " there are medicines that can be managed " Let whole family see the hope. 1480 one stitch, play once a week, one month 12 stitch, the intersection of parents and very enormous economic pressure of Chao Liu insist on, give child cure the disease, the good fund of hundreds of thousands of yuan from society is used up quickly. So long as medicines stop, the child's life will be threatened. Fortunately, she enjoy, good for the intersection of Zambia and Company, present medicine has already 11 years so far. Once donate and stop, the great amount of expenses for medicine will be unable to submit an expense account. Nowadays, Liu Chao has already studied in one university of this city, but the question which Chao one's home worries about most that the future treatment is still Liu. The expenses for medicine of several million yuan of every year after all, it is not that individual can bear. When hearing that launches the activity in propaganda month, Liu Chao's mother has a kind of impulse that wants to cry, having gone through and fought in isolation for many years, someone paid close attention to seeing rare disease crowd at last, she is very gratified. -Stones from other hills U.S.A.: Having issued " rare disease administration law " in 1983, the clinical research expenditure deductions and exemptions tax of right rare disease, and offer the subsidy for research, the rare disease patient enjoys government's medical treatment and health care plan and double guarantee of business insurance. Taiwan of China: Issued " rare disease preventing and curing and medicine law " in 2000, the medicine which patients used and special nutriment expenses involved in maintaining life were implemented and submitted an expense account fully. -Current situation They are " The weak tendency in the disadvantaged groups " Liu GuoLin, general secretary of China Charity Federation, introduces, little number rare disease patients, to rare diagnosis and treat competence to be even high of disease most medical worker of basic unit, in addition most hospitals lack the checkout equipment of the essential rare disease at present, the rare disease patient often is leaked and examined, misdiagnoses, and miss the chance to intervene and therapeutic, cause irreversible health and intelligence deformity. Meanwhile, concern intensity to the rare disease patient of the society is not enough yet, the rare disease patient endure disease to the fullest extent to torment, also bear heavier psychology, financial burden. At present, the rare disease patient's colony has not caused society's enough attention, it is unable to submit an expense account to treat the expenses. So, the rare disease patient is that one demands charities of our country and disadvantaged groups which the whole society pays close attention to urgently, can be even said to be " The weak tendency in the disadvantaged groups " .


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