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Rare Disease Relevant Legislation Relating To National Population Health Difficulties by big tree
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Rare Disease Relevant Legislation Relating To National Population Health Difficulties by BIG TREE
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| Article Posted: 09/29/2010 |
| Article Views: 21 |
| Articles Written: 1033 - MORE ARTICLES FROM THIS AUTHOR |
| Word Count: 695 |
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Rare Disease Relevant Legislation Relating To National Population Health Difficulties |
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Son 4 years old, high-ki (a pseudonym) was found walking on the unusual couple, with age simply can not sit today, 20 years onward, women's high-Qi Fu traveled around the well-known hospitals in China, but so far no clear son What is the illness was.
True and complete despair hung over the family, was born 10 years after the age of 5 occur in his daughter and brother the same symptoms.
"Our family is no such genetic diseases, check clear the child's illness, I was always very willing." Nearing his sixtieth year of the high-Qi only hope that a truth in their lifetime.
Dilemma: patients with or without drug treatment or the administration can not afford
In Taiwan of China, "We see many families gave birth to 23 children have the same disease. If you do not Education And do not provide benefits to attract, so the administrative system to its volume control, and their marriage and fertility planning, spreading, eventually the government still have to pay the bill. "
A rare disease in Taiwan "legislative" important promoters have Minfu drip? This year in April, held at Tsinghua University Symposium on Rare Diseases, said, "rare disease is a public health problem." Zeng Min
study sociology degree group of poor thickening? Ben? Proud spacious? Was an accident.
Of the last century 90's, got his son was born with a rare disease.
Time, Zeng Min macrophylla?? Jump, at the terrifying ? Roots? Children sudden onset, urgency of the situation, but the hospital told doctors and Taiwan is no drug can treat a very rare metabolic disease, only to emergency relief Taiwan is to find a woman, her hand had come back from abroad rescue their own children's medicines.
"Currently most of the rare patients face two difficulties: either is not curable, there is a drug treatment or can not afford." China's Economic System Reform Research on Public Policy Research Center, Songhua Lin, "the rule of law weekend, "told reporters:" Many patients do not develop out of medicine, there is another expensive drug, such as Ge TSE disease with enzyme replacement therapy, the normal monthly cost of nearly 20 million, there are few families can afford? "
Huazhong University of Science Tongji Hospital, Tongji Medical College, Dr Luo Xiaoping, long engaged in clinical research, he is not optimistic that the current situation, China's health agencies, Pharmaceutical Industry And medical personnel on the rare disease, very low level of awareness and diagnosis, we encounter many such diseases, but not to diagnose, let alone treatment, domestic enterprises have not developed a drug to treat rare diseases. Yun Zeng Min hollow
consultative acupuncture?? Qiang Trapa natans tear Ben? Shoulder Yi and the writing is? Shade go deep Mu ? No information from the patient's pressure, no treating physician; statistical data show that the diagnosis of rare diseases for a long time, often is the constant referral, misdiagnosis, further referral, such as high-ki, unanswered for decades is not extreme a case of the situation; even if the final diagnosis, drugs are also difficult to find, no pharmaceutical companies have incentive to Import Very little demand for drugs; economic burden Shangju is the last step of the problem.
"Difficulties have highlighted the plight of rare patients, coupled with the risk of death at any time, the pressure is very great." Rare disease has been committed to relief sheet Xie Xin Zeng Min Chang??
Significance: not only for the minority legislation
According to the WHO definition, the number of patients of the total population of 0.65 to 1 between the disease or disease known rare diseases, but the provisions of various countries and regions, the incidence is different. Internationally recognized five or six thousand kinds of rare disease, accounting for human disease 10 . Click here if the proportion of various rare Chinese patients with more than 10 million people. I am China Manufacturers writer, reports some information about left handed golf club , brush tee.
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