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迈向全球血友病护理——世界血友病联盟计划

Towards achieving global haemophilia care--World Federation of Hemophilia programmes.

作者信息

Lee C A

机构信息

Haemophilia Centre, Royal Free Hospital, London, UK.

出版信息

Haemophilia. 1998 Jul;4(4):463-73. doi: 10.1046/j.1365-2516.1998.440463.x.

Abstract

The overall purpose of the 'Decade Plan' published in 1992 was to do everything possible to make effective treatment available to people with haemophilia throughout the world. In 1990 it was estimated that there were 350,000 individuals with haemophilia worldwide, with 80% or 280,000 without treatment. By the year 2020 this may have reached the figure 440,000, or the population of Jerusalem. Earlier this century Carroll Birch reported a series of 113 patients where 82 died before their 15th year, and only six survived beyond 40. Thus as Jones has pointed out for the developing world this is a paediatric problem for the WFH to face now. The examples described in this paper illustrating the WFH programmes and the commitment of many people from the 88 member organisations worldwide as well as the doctors and scientists shows what can be done through cooperation. There is no doubt that these achievements are capitalising from the unique quality of WFH from the beginning, that is a membership which includes both those with haemophilia and their families, and those with an interest in treating haemophilia.

摘要

1992年发布的“十年计划”的总体目标是尽一切可能让全世界的血友病患者都能获得有效的治疗。1990年估计,全世界有35万血友病患者,其中80%即28万人未得到治疗。到2020年,这一数字可能会达到44万,即耶路撒冷的人口数。本世纪初,卡罗尔·伯奇报告了113例患者,其中82人在15岁之前死亡,只有6人活到40岁以上。因此,正如琼斯所指出的,对于发展中世界来说,这是世界血友病联盟目前面临的一个儿科问题。本文所述的例子说明了世界血友病联盟的项目,以及来自全球88个成员组织的许多人以及医生和科学家的奉献精神,展示了通过合作可以取得的成果。毫无疑问,这些成就从一开始就得益于世界血友病联盟的独特性质,即其成员包括血友病患者及其家人,以及对治疗血友病感兴趣的人。

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