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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.
Immunologic Research ( IF 4.4 ) Pub Date : 2019-10-01 , DOI: 10.1007/s12026-019-09093-9
A Sediva 1 , M Bataneant 2 , M Belevtsev 3 , A Blaziene 4 , P Ciznar 5 , E Förster-Waldl 6 , J Kelecic 7 , J Marodi 8 , E Naumova 9 , G Nasrullayeva 10 , K Ress 11 , M Serban 12 , B Sitkauskiene 13 , B Toth 14 , V Modell 15 , F Modell 15 , V Tenembaum 15 , M Marković 16 , T Avcin 17
Affiliation  

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.

中文翻译:

中欧和东欧的主要免疫缺陷-网络的力量有关中欧和东欧Jeffrey Modell基金会中心网络活动的报告。

Jeffrey Modell Foundation中心在中欧和东欧(JMF CEE)的网络活动为发展原发性免疫缺陷患者的护理做出了贡献。自2011年以来,从参与国的各个中心不断收集的数据中,我们证明了在涉及原发性免疫缺陷患者复杂护理的许多方面都在稳步改善。所提供的数据表明,整个中欧和东欧地区对这些罕见疾病的认识有所提高,新诊断的患者以及遗传确诊的病例有所增加,更早地确立了诊断方法,并改善了获得临床治疗的机会。我们还展示了积极的患者参与,这反映在患者组织中心及其活动的扩展上。JMF CEE网络内部的合作也促进了参与中心在国际上的知名度进一步提高,并进一步促进了在快速发展的原发性免疫缺陷领域的研究活动的逐步发展。JMF CEE网络内原发性免疫缺陷综合领域所有重要方面的改进证明了联合和协调网络的优势和优势。
更新日期:2019-11-01
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