Research Of Rare Disease Information Dissemination Model Based On The Long Tail Theoretical Thinking

A rare disease is usually considered to be one that affects not more than 650 to 1000 people per million persons. Difficulties as a result of the diagnosis, treatment no choice, in some cases, the prognosis may be due to genetic and ethical issues or related to other reasons, rare disease has been the interface of medical problems. Although rare disease has a small proportion, a large population base in China, the absolute number is not small, and with the family structure is more and more simple, a rare disease, in particular, a serious life-threatening or chronic wasting disease and the diseases easily disabled is a serious burden on the family and society. In addition, the study of rare diseases can also enhance the development of medicine treatment and medical treatment in China, therefore, attaches great importance and resolve the issue of a rare disease is imperative.The main difficulties of Orphan Drug Research and Development is by both sides, on the one hand, the small number of patients, limited commercial value, on the other hand, insufficient cases. Cost-effectiveness may be ignored because of national policy, the congregation of patients, medicine institutions and medical institutions through information dissemination platform can resolve the inadequate of patients, at the same time, to some extent, alleviate the economic plight.In this paper, the main theory are the long tail and information dissemination. the platform will be a aggregator of government, medicine research & development institutions, medical institutions and patients & public. These forces will promote Chinese medicine institutions and medical institutions as having possible number of samples of a rare disease, and the patient can be a greater probability of recovery.The establishment of information dissemination platform also needs give different permission to the major forces, according to their initial states, the activity as well as the contribution in the platform, in order to limit the relevant authority to ensure the confidentiality of information . Not only that, but all of the information sharing in the platform need to follow the same standard format, thus more conducive to the retrieval and dissemination of information exchange. this paper established a pattern of information dissemination and information dissemination platform steps.