Jones Peter, Robillard Line
World Federation of Hemophilia, 1425 René Lévesque Boulevard West, Suite 1010, Montreal, Québec, Canada.
Haemophilia. 2003 Nov;9(6):663-9. doi: 10.1046/j.1351-8216.2003.00831.x.
In 2003, the World Federation of Hemophilia marks its 40th anniversary. Established in 1963 by Frank Schnabel, a person with hemophilia from Montreal, Canada, the WFH has grown into its role as an independent, not-for-profit representative of the global haemophilia community. Since then, its biannual world congresses have provided an opportunity to exchange information on research and treatment. Today, more than 3,000 delegates attend these congresses. Until the early 1990s, the WFH's other major function was the International Hemophilia Training Centre programme, offering training fellowships and workshops to medical and paramedical staff from developing countries. In 1982, AIDS was reported in people with haemophilia who had received tainted blood products. The WFH developed task forces and committees to monitor safety and supply issues and set up the Global Forum on the Safety and Supply of Treatment Products. In the mid-1990s, twinning programmes were established for treatment centres and national haemophilia organizations. Twinning facilitates the exchange of training, coaching, and expertise. In the late 1990s, the WFH expanded and began working with local organizations and health authorities in a number of countries to improve the diagnosis and care of persons with hemophilia. The federation currently has ongoing projects in 25 developing countries. On World Hemophilia Day, April 17, 2003, the WFH launched the Global Alliance for Progress (GAP) in haemophilia which aims to double the number of people with haemophilia diagnosed and receiving treatment in up to 40 developing countries over a 10-year period.
2003年,世界血友病联盟迎来了其成立40周年。该联盟由来自加拿大蒙特利尔的血友病患者弗兰克·施纳贝尔于1963年创立,如今已发展成为全球血友病群体的独立非营利性代表机构。自那时起,其每两年举办一次的世界大会为交流研究与治疗信息提供了契机。如今,有超过3000名代表参加这些大会。直到20世纪90年代初,世界血友病联盟的另一项主要职能是国际血友病培训中心项目,为发展中国家的医护人员和辅助医护人员提供培训奖学金和研讨会。1982年,有报告称接受了受污染血液制品的血友病患者感染了艾滋病。世界血友病联盟成立了特别工作组和委员会来监测安全和供应问题,并设立了治疗产品安全与供应全球论坛。20世纪90年代中期,为治疗中心和国家血友病组织建立了结对项目。结对有助于培训、指导和专业知识的交流。20世纪90年代末,世界血友病联盟进行了扩展,并开始与一些国家的地方组织和卫生当局合作,以改善血友病患者的诊断和护理。该联盟目前在25个发展中国家开展着项目。在2003年4月17日世界血友病日,世界血友病联盟发起了血友病全球进步联盟(GAP),其目标是在10年时间里,使多达40个发展中国家被诊断出并接受治疗的血友病患者数量增加一倍。