中文摘要：

目的探索我国罕见病药品的销售模式,促进罕见病患者用药可及性。方法采取文献研究方法对美国罕见病用药的专业药房销售模式进行分析,借鉴其成功经验,提出选择我国罕见病药品销售模式的思路。结果针对罕见病用药的不规则低需求、高用药生理和心理需求、高个性化用药和及时性用药需求及高价格、高购买成本的销售特点,美国的罕见病用药生产、流通企业采取与常见病药品不同的营销方式,如建立专门的信息服务平台,采取同步性销售、示范促销、人员促销、服务促销、靶向性专业化销售、邮件预订和靶向公关策略等营销方式。结论在我国的每个省份或者地级市确定专业药房和罕见病用药生产与储备目录,把顾客群靶向性定位于罕见病患者,与罕见病患者、医生、药品生产商、保险方联合起来,提高罕见病药品的可及性。

英文摘要：

Objective To explore Chinese orphan drug sales model,to promote orphan drug availability.Methods U.S.orphan drug sales model of professional pharmacy was analyzed by the literature research method,drawing on its successful experience,made the selection idea for orphan drug sales mode in China.Results In allusion to the sales characteristics of orphan drug,such as irregular low demand,high physical and psychological needs medication,high personalized medicine,timeliness of drug demand,high prices and high purchase cost,the U.S.production,circulation and enterprises of orphan drug were adopt different marketing methods to common drugs such as the establishment of specialized information service platform,to synchronization of sales,sales demonstrations,staff promotions,service,promotions,targeting professional sales,mail order and public relations strategies targeted marketing.Conclusion In our country in each province or prefecture-level city,to determine the professional pharmacy and orphan drug production and reserves of the directory,to target customer base located in the rare patients,doctors,drug manufacturers,insurers together,to improve orphan drugs accessibility.