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第三届国际软骨发育不全与罕见病卓越研究网络(ISCBH-ERN)软骨发育不全儿童长骨病理学研讨会会议报告,奥地利萨尔茨堡,2024年6月22日

Meeting report from the 3rd ISCBH-ERN BOND Achondroplasia Workshop on Long Bone Pathology in Children with Achondroplasia, Salzburg, Austria 22nd June 2024.

作者信息

Cheung Moira S, Alves Inês, Carl-Innig Patricia, Eastwood Deborah, Maghnie Mohamad, Offiah Amaka, Paley Dror, Riganti Simone, Savarirayan Ravi, Sessa Marco, Vogt Bjoern, Mohnike Klaus

机构信息

Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.

ERN BOND ePAG, ANDO Portugal, University of Évora - CHRC, Évora, Portugal.

出版信息

Bone. 2025 Jan;190:117268. doi: 10.1016/j.bone.2024.117268. Epub 2024 Oct 2.

Abstract

A pre-meeting workshop on Long Bone Pathology in Children with Achondroplasia was held in Salzburg, Austria at the 11th International Conference on Children's Bone Health (ICCBH) 22-25 June 2024. There remains poor understanding and awareness amongst physicians managing achondroplasia of the underlying pathophysiology, radiology, natural history and orthopaedic procedures available for long bone deformities and restrictions. The structure of the workshop consisted of presentation of the results of a multinational patient survey on views of leg lengthening in achondroplasia, lectures, a debate and an interactive round table discussion. In total 150 attendees from 71 different cities and 31 countries were in attendance.

摘要

2024年6月22日至25日,在奥地利萨尔茨堡举行的第11届国际儿童骨骼健康会议(ICCBH)期间,举办了一场关于软骨发育不全患儿长骨病理学的会前研讨会。在治疗软骨发育不全的医生中,对于长骨畸形和受限的潜在病理生理学、放射学、自然史以及可用的骨科手术,仍然存在理解不足和认识不够的情况。研讨会的结构包括介绍一项关于软骨发育不全患者对腿部延长看法的多国患者调查结果、讲座、一场辩论以及一次互动式圆桌讨论。来自71个不同城市和31个国家的150名与会者出席了会议。

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