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首页> 外文期刊>Immunologic Research: A Selective Reference to Current Research and Practice >Primary immunodeficiencies in Central and Eastern Europe-the power of networking Report on the activity of the Jeffrey Modell Foundation Centers Network in Central and Eastern Europe
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Primary immunodeficiencies in Central and Eastern Europe-the power of networking Report on the activity of the Jeffrey Modell Foundation Centers Network in Central and Eastern Europe

机译:中欧和东欧的主要免疫缺乏 - 网络报告关于中欧和东欧杰弗里莫德尔基金会中心活动的网络报告

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摘要

Jeffrey Modell Foundation centers' network activities in Central and Eastern Europe (JMF CEE) have contributed to the development of care for patients with primary immunodeficiencies. On the data continuously collected from individual centers in participating countries since 2011, we demonstrate a steady improvement in a number of aspects concerning complex care for patients with primary immunodeficiencies. The presented data show an improvement of awareness about these rare diseases across the whole Central and Eastern European region, an increase in newly diagnosed patients as well as genetically confirmed cases, earlier establishment of diagnosis, and improved access to clinical treatment. We also present an active patient involvement that is reflected in the expansion of patient organization centers and their activities. The cooperation within the JMF CEE network has also contributed to greater international exposure of participating centers and further to the gradual development of research activities in the rapidly evolving field of primary immunodeficiencies. The improvement of all important aspects of the complex field of primary immunodeficiencies within the JMF CEE network documents the strength and advantages of the joint and coordinated networking.
机译:Jeffrey Modell基金会中心的中欧和东欧的网络活动(JMF CEE)为主要免疫缺乏的患者提供了贡献。根据自2011年以来从参与国的各个中心持续收集的数据,我们展示了对初级免疫缺乏患者的复杂护理的许多方面的稳步改善。本数据表明,对整个中欧和东欧地区的这些罕见疾病的认识提高了对新诊断的患者以及遗传确诊的病例,早期建立诊断,并改善了临床治疗的进入。我们还存在积极的患者参与,这反映在患者组织中心及其活动的扩张中。 JMF CEE网络内的合作也有助于更大的参与中心曝光,并进一步逐步制定初级免疫缩小型迅速发展领域的研究活动。 JMF CEE网络中主要免疫缺少复杂领域的所有重要方面的改善记录了联合和协调网络的强度和优势。

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