Study On The Health Care Of Rare Diseases Of Jiangsu Province

In the summer of 2014, "ALS Ice Bucket Challenge" throughout the world, and the rare disease had begun to attract social attention. Currently, worldwide rare diseases had been known have reached more than 6,000, which only accounts for 10% of the total number of human diseases, and only about 1% of the rare diseases have effective treatments.In china, the attention and research of rare diseases started very late with slow development in diagnosis, treatment and prevention of rare diseases. Just very few governments of provi nce or city have began doing the relation work of the health care of rare diseases. Compared to other countries and regions, such as the United States, the European Union and Taiwan, we need to very much work on aspects of rare diseases in health care.Hoping much more attentiong can be rised because of this article, hoping more and more systems can be carried out to improve the living conditions of rare diseases, and promote social harmony and healthy development.Therefore, this article analyzes the current situation of the relevant literature and health care of rare diseases. By carding the situation of rare diseases and the health care of rare diseases in China, to know the big picture all over of the country. According to reading the relevant literature and National Strategic Plan of several countries, summing up and sorting out the emphasis and highlight of their work of health care of rare diseases. Bying collecting the documents of the implementation of health care of rare disease in several provinces and cities, comparing and summarizing their way to carry out the work.Secondly, take the Gaucher disease as an example, researching the situation of health care of rare disease in Jiangsu Province, and analysising the necessity and feasibility of the implementation of health care of rare disease. Necessity of the analysis from the patient’s circumstances and affordability, and the possibility of the analysis mainly elaborated from three aspects:the capacity of the health insurance fund, the relevant government finances and the system of the health care.Finally, according to the analysis and elaboration of two parts above, giving the appropriate policy advices, such as to make multi-sharing health care system basing on different subjects like government, enterpeise, society and person himself, hoping to providing a little of ideas in the implementation of health care of rare disease in Jiangsu Province.