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but this research into the diagnosis and treatment of some patients carried out, will one day benefit more patients. Without them, we could not recognize the body of these three features more than ten thousand genes, in this sense, they are not social burden, but the wealth of society. So we have no reason to ignore the rare disease? "Huang Yu to" off "means. From invisible to see is a change from seeing the need for more people to become great importance to the efforts. Standard rare diseases So far the definition of a rare disease is not yet clear and official standards. May 2010, the Chinese Medical Association Medical Genetics Branch in Shanghai held a rare disease is defined China expert seminar.

all patients with Gaucher parents or relatives. We often come together, help each other, to share experience in the treatment and care experience, for social resources to help needy families. "Chronic illness into health, I often give patients a number of treatment recommendations, but I'm not a professional, after all, a doctor, only from my personal experience, but in fact every individual differences between patients is great." say . Early last year, when watching movies, "Les Choristes" and inspired: Taiwan rare diseases organize various activities of the choir, the mainland is no such art forms show the positive and optimistic rare disease patients. Perhaps happy with a rare disease infection social living conditions, a good way is to make society understand well understood.

the "Chinese prevalence rate of less than 1/500000 or neonatal morbidity of the disease in less than 1 in 10,000," defined as rare diseases. According to the World Health Organization (WHO) definition of a rare disease is the number of patients of the total population of 0.65 � -1 � disease. Foreign Policy The United States in 1983 by the world's first Orphan Drug Act, this bill guarantees access to drugs for rare diseases fastest registration, the company also developed so get tax and other concessions bill. Before the promulgation of the Act, the US market is less than 10 orphan drug, to December 2008, the US Food and Drug Administration's orphan drug registration has reached 1,951 kinds, 325 kinds obtained marketing approval. At present, Japan, Australia, the European Union has passed a similar law. (EdiLi Ning["Global People" magazine reporter Yuan Ye] 7 years ago, the 45-year-old Li Ning became the youngest Chinese Academy of Engineering academician, such as star-like bright. As a National Key Laboratory of Agricultural Biotechnology, director of the China Agricultural University, Li Ning, known as "China's animal transgenic cloning research leader," China Animal cloning has been successfully established and developed bioreactor system, presided over a number of major national research projects. However, it is such a glittering figure, but with the "corruption" linked to together. Recently.

so he was prepared to set up a "Firefly" choir. Soon there are many rare diseases response,hogan interactive, although unfortunate misfortune vary, but soon, the function of the choir is not only singing, it has also become a rare exchange of communication channels. Long Lin is "Firefly" chorus at home, but also "Chinese LAM Care Association," president. 2008 in conjunction with other agencies to develop a rare disease, "China rare disease legislation" proposal, commissioned by National People's Congress successfully submitted two sessions. "I've been through that part of the most bleak years of medical treatment, so I want my patients to be happy than I am." he said. "Understanding can be out of a rare disease is the most serious part of those symptoms.

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tvb136s69 on "hogan online Australia"