The rare disease patient of our country exceeds 40 million It is extremely deficient to prevent and cure and study

The rare disease patient of our country exceeds 40 million It is extremely deficient to prevent and cure and study
The rare disease patient of our country exceeds 40 million It is extremely deficient to prevent and cure and study
News from Jinan on October 17 ' The bright river reporter of reporter's grandson Xu ShuangQing) "Become bone complete disease, law mine disease, dagger-axe wither disease, albinism "This makes the doctor all very strange in clusters, but disease making the patient miserable, a part of the just rare disease. Reporter prevent and cure association, know at the the first representative assembly in the intersection of Shandong and rare disease that today finish, if is only single number, rare disease may well be termed " rarely " ,And the quantity of patient of the rare disease of 6000 multi-type of total number, is up to more than 40 million in our country, it is equivalent to half of large province Shandong of the population. Some child play pieces of sneeze, mention pieces of basket, even one embrace, can let the intersection of they and fracture, this is becoming bone not complete disease; Half-length under some children to very cut longer than the upper part of the body obviously, this is Ma Fan's syndrome; Other children were born on the gray hair, white eyebrow, the skin had fold, like " white eyebrow swordsman " ,This is albinism. World Health Organization defines these ill number of people as the rare disease. Today, association establishes in Shandong the rare prevention and cure of disease of first of our country, this is the first association of rare prevention and cure of disease accredited by the government of the whole country. Professor Han JinXiang elected president of the first council of this association newly introduces, there are 5000- 6000 kinds of rare diseases already confirmed at present, account for 10% of the human disease. Last day in every February is determined as in the world " Rare disease day " . Set up rare disease association, rare disease foundation in U.S.A., European Union and Taiwan Province, China,etc., ensure the law after making rare disease, to ensure the rare disease patient's health rights and interests. Because the morbidity is extremely 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. Rare disease has common characteristics: Majority initiate for gene mutation and medical research little it lacks clinical treatment means, social cognitive intensity to be little discriminating against, isolating, sending to society poor, etc due to illness with societying. Domestic study on rare disease, treat, at initial stage also, it studies rare organizations of disease to be little, expert little, most rare disease patients are misdiagnosed, leaked and examined for a long time, can't get the effective treatment in time. Member of the CPPCC National Committee, Li Dingguo, Professor of Shanghai Communications University, point out here, as to common disease, rare disease is the medical area research of our country and are put into more weak links, it is obviously put into compared with common disease insufficiently that country's scientific research is put into. Almost there is no research which organization specializes in in this respect at home. This make it diagnose, prevent and treat competence to be high more and more too, resource that patient get and ensure extremely limited even. Because the expenses are expensive, success rate is low, develop production very riskily, Li Dingguo says, treatment and medicine of the rare disease of our country are studied in the predicament at present. Therapeutic medicines of the rare diseases are nearly all imported for foreign countries, and lack the initiative of introducing foreign medicines, it is registered that it is domestic that the patient can only expect passively the foreign medicine enterprise gets. These medicines not only cost an arm and a leg, has not but also listed in the medicines catalogue of the medical insurance yet, the patient is burdensome. Meanwhile, rare disease patient and his family endure discriminating against and unjust treatment to the fullest extent, often face pressures such as education, employment and marriage and childbirth,etc.. If by 3 persons and a family, nearly 1/10 of the families are tormented by rare disease in our country. Han JinXiang thinks, the rare disease of our country is prevented and cured and studied, the task of top priority is, mobilize personages of various circles of society to support the undertaking of rare prevention and cure of disease in a more cost-effective manner, launch academic research such as scientific research of rare disease, medical treatment and exchange, promote basic medical research to combine with clinical medicine, jointly promote the research of relevant disease, promote the academic level of medical science, prepare and organize the rare disease database, promote relevant scientific research. The experts call upon, make the project laws and regulations that the rare disease prevents and cures as soon as possible, offer legal support for ensuring the rare disease patient's every rights and interests. Establish nationwide academy to organize as soon as possible, promote the research of nationwide cooperation, declare the great subject, organize joining in a battle big, take out the great achievement, solve the big problem. Also contact and exchange with the international rare disease organization, form partnerships, promote it to the cognition of the rare disease and treatment technology of the diagnosis; Help to set up the rare disease prophylactico-therapeutic institution in the basic unit, set up professional committee, engage the expert to establish Committee of Experts, set up the networks of rare prevention and cure of disease of our country progressively.


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