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英国罕见病应对策略及其对我国的启示

             

摘要

The department of health in Britain issued Rare Diseases Coping Strategies in 2013, which made the wish for rare diseases treatment spread throughout the commonwealth countries. It rules that the country should improve the fair way to go to a doctor, provide patient-centered coordination, and professional basic medi-cal services, etc., with the purpose of promoting cooperative work among national health services, research group, academia and industry. The implementation of this policy has improved government attention, the quality of the service for patients, and has promoted the ability of research, treatment and care of rare diseases At the same time, there exist such problems as overrunning insurance cost, imbalance development and blur use of rare medicine, etc.. Patients with rare disease are in difficult situation in China, and Britain's strategy has certain ref-erence significance on the legislation of rare diseases in China, and has its enlightenment to China in the fields of cooperation between the organizations, the protection of the rights of patients with rare diseases, the guarantee for actual drug use, etc..%2013年英国卫生部发布《罕见病应对策略》,其规定国家应改善公平的就医途径,提供以病人为中心协调、专业的基本医疗服务等,以促进国民卫生服务、研究团体、学术界和产业界之间的协同工作;此策的施行,提高了政府对之的关注度和患者服务质量,提升了罕见病研究、治疗与护理的领先能力。我国罕见病患者亦面临困境重重,英国的策略对我国的罕见病立法有一定借鉴意义,并为组织间的合作、保障罕见病患者的权益、实际可及的用药保障等带来启示。

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