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2月29日是国际罕见病日,最初由欧洲罕见病组织于2008年发起,四年一次的节日也象征着罕见病的“罕见”。什么是罕见病?我国罕见病群体的现状如何?与常见病相比,罕见病群体遇到的难题有哪些?对此,罕见病发展中心主任黄如方、中国医学科学院阜外医院副主任医师罗勤、北京医药卫生经济研究会副秘书长范长生发表了自己的看法。没有“户口”的苦恼罕见病,顾名思义,是对那些发病率低、慢性、严重,常常危及生命的疾
February 29 is the International Rare Day, originally launched by the European Rare Disease Organization in 2008 and the quadrennial festival symbolizes rare. What are the rare diseases? What is the status quo of rare diseases in our country? Compared with common diseases, what are the problems encountered by rare diseases? In this regard, Director of Rare Disease Development Center Huang Rufang, Deputy Director of Fuwai Hospital, Chinese Academy of Medical Sciences Luo Qin , Fan Changsheng, deputy secretary general of Beijing Medical and Economic Economic Research Association, expressed his own views. No “hukou ” distress rare disease, as the name suggests, is for those with low incidence, chronic, serious, often life-threatening disease