Kasper Bernd, Schuster Kathrin, Wilson Roger, Bickley Sorrel, Blay Jean-Yves, Reinke Denise, Wartenberg Markus, Haas Rick
Sarcoma Unit, Mannheim Cancer Center (MCC), Mannheim University Medical Center, University of Heidelberg, 68167 Mannheim, Germany.
Sarcoma Patients EuroNet, SPAEN, 61200 Wölfersheim, Germany.
Cancers (Basel). 2022 Feb 9;14(4):854. doi: 10.3390/cancers14040854.
Sarcomas are a grouping of rare cancers with a wide variety of histological types that are difficult to diagnose and treat. This leads to many varying challenges not only for sarcoma patients, but also for doctors, researchers, and caregivers. Patient advocacy groups have an important role to play in rare cancers such as sarcomas, especially in collaboration with experts and their medical societies. To this end, patients and patient advocates from Sarcoma Patients EuroNet (SPAEN), a global network of national Sarcoma Patient Advocacy Groups, and medical experts from the scientifically driven Connective Tissue Oncology Society (CTOS) came together on 9 November 2021 at an official ancillary event to the CTOS 2021 Annual Meeting. At the event, representatives of CTOS and SPAEN jointly discussed gaps and challenges in global sarcoma care and management. This resulting position paper highlights the main findings and possible future steps.
肉瘤是一组罕见癌症，具有多种组织学类型，难以诊断和治疗。这不仅给肉瘤患者带来诸多不同挑战，也给医生、研究人员和护理人员带来挑战。患者倡导组织在肉瘤等罕见癌症中发挥着重要作用，尤其是与专家及其医学协会合作时。为此，来自全球国家肉瘤患者倡导组织网络“欧洲肉瘤患者网络”（SPAEN）的患者和患者倡导者，以及来自以科学为导向的结缔组织肿瘤学会（CTOS）的医学专家，于2021年11月9日在CTOS 2021年会的一次官方附属活动上齐聚一堂。在此次活动中，CTOS和SPAEN的代表共同讨论了全球肉瘤护理和管理方面的差距与挑战。这份形成的立场文件突出了主要发现以及未来可能采取的步骤。
