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居家办公血友病中心结对项目:1993年至2003年的十年发展历程

The WFH Haemophilia Centre Twinning Programme: 10 years of growth, 1993-2003.

作者信息

Giangrande P L F, Mariani G, Black C

机构信息

World Federation of Haemophilia, Montréal, Québec, Canada.

出版信息

Haemophilia. 2003 May;9(3):240-4. doi: 10.1046/j.1365-2516.2003.00759.x.

Abstract

The World Federation of Haemophilia (WFH) Twinning Programme celebrates its tenth anniversary this year. Twinning is one of several international WFH programmes designed to improve haemophilia care at a global level. There are two types of twinning, and the haemophilia treatment centre twinning programme should be distinguished from the WFH haemophilia organization twinning involving national member organizations. The WFH Haemophilia Treatment Centre Twinning Programme helps emerging haemophilia treatment centres develop partnerships with well-established and experienced centres. Twinning can improve diagnosis and clinical care through coaching, training and transfer of expertise, ultimately leading to improved quality of life for patients. Twinning can also enhance the profile and recognition of treatment centres in emerging countries, which can be valuable in raising awareness among politicians and the media. Examples of activities include consultation on the management of specific cases, clinical and laboratory training, donation of equipment and publications as well as research projects. The centre twinning programme also benefits centres in developed countries by giving them the opportunity to gain exposure to clinical problems no longer encountered in their own countries, as well as experience of new cultures. Currently, a total of 23 treatment centres around the world are linked through the twinning programme and applications for new partnerships are welcome. Twinning links are not permanent, but are reviewed on an annual basis and typically remain in place for periods of 3-5 years. Limited financial support from WFH is available to twinned centres in the form of money for an initial assessment visit, as well as regular annual grants to established partners and the possibility of applying for additional funding to support specific projects. In addition, continuing support and advice are available from the WFH regional programme officers.

摘要

世界血友病联盟(WFH)结对项目今年迎来了十周年纪念。结对是世界血友病联盟在全球范围内旨在改善血友病护理的多个国际项目之一。有两种结对类型,血友病治疗中心结对项目应与涉及国家成员组织的世界血友病联盟血友病组织结对区分开来。世界血友病联盟血友病治疗中心结对项目帮助新兴的血友病治疗中心与成熟且经验丰富的中心建立伙伴关系。通过指导、培训和专业知识传授,结对可以改善诊断和临床护理,最终提高患者的生活质量。结对还可以提升新兴国家治疗中心的形象和认可度,这对于提高政治家和媒体的认识很有价值。活动示例包括特定病例管理咨询、临床和实验室培训、设备及出版物捐赠以及研究项目。中心结对项目也使发达国家的中心受益,让它们有机会接触到本国不再遇到的临床问题以及新文化体验。目前,全球共有23个治疗中心通过结对项目建立了联系,欢迎申请新的伙伴关系。结对关系不是永久性的,而是每年进行审查,通常持续3至5年。世界血友病联盟会提供有限的资金支持,以资金形式用于结对中心的首次评估访问,以及向既定伙伴提供定期年度赠款,并有可能申请额外资金以支持特定项目。此外,世界血友病联盟区域项目官员会提供持续的支持和建议。

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