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RarERN Path: a methodology towards the optimisation of patients’ care pathways in rare and complex diseases developed within the European Reference Networks

机译：Rarern Path：在欧洲参考网络中发育难以和复杂疾病中患者护理途径的优化方法

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Rosaria Talarico; Sara Cannizzo; Valentina Lorenzoni; Diana Marinello; Ilaria Palla; Salvatore Pirri; Simone Ticciati; Leopoldo Trieste; Isotta Triulzi; Enrique Terol; Anna Bucher; Giuseppe Turchetti;
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1. Will European Reference Networks herald a new era of care for patients with rare and complex diseases? [J] . Azzopardi-Muscat Natasha, Brand Helmut European journal of public health . 2015,第3期

机译：欧洲参考网络会预示着罕见和复杂疾病患者护理的新时代吗？
2. The pooling of manpower and resources through the establishment of European reference networks and rare disease patient registries is a necessary area of collaboration for rare renal disorders [J] . Samantha Parker Nephrology, dialysis, transplantation: official publication of the European Dialysis and Transplant Association - European Renal Association . 2014,第Suppla4期

机译：通过建立欧洲参考网络和罕见病患者注册中心来集中人力和资源是罕见肾病合作的必要领域
3. Rare respiratory diseases are ready for primetime: from Rare Disease Day to the European Reference Networks [J] . Marc Humbert, Thomas O. Wagner The European respiratory journal : . 2017,第2期

机译：罕见呼吸道疾病已为黄金时段做好准备：从“罕见病日”到欧洲参考网络
4. Implementation of EXABO - An Expert Advisory Board for the European Reference Network for Rare Respiratory Diseases [C] . Désirée Walther, Olivia Steinmann, Thomas O.F. Wagner, Medical Informatics Europe Conference . 2020

机译：exabo的实施 - 欧洲参考网络稀有呼吸系统疾病的专家咨询委员会
5. Improving Patient Outcomes by Implementing the Interact Care Path (ICP) Symptoms of Lower Respiratory Infection Pathway in the Long-Term Care Setting [D] . ?Lam, Jennifer 2020

机译：通过在长期护理环境中实施较低呼吸道感染途径的相互作用护理路径（ICP）症状改善患者结果
6. RarERN Path: a methodology towards the optimisation of patients’ care pathways in rare and complex diseases developed within the European Reference Networks [O] . Talarico Rosaria, Cannizzo Sara, Lorenzoni Valentina, 2020

机译：Rarern Path：在欧洲参考网络中发育难以和复杂疾病中患者护理途径的优化方法
7. OP0277-PARE METABERN, THE EUROPEAN REFERENCE NETWORK FOR RARE HEREDITARY DISEASES: STRUCTURE, OBJECTIVES, METABOLIC RMDS AND THE ROLES OF EUROPEAN PATIENT ADVOCACY GROUPS (EPAGS) [O] . L. Wagner, S. Sestini, C. Brown, 2021

机译：OP0277-Pare Metabern，欧洲参考网络稀有遗传性疾病：结构，目标，代谢RMD和欧洲患者倡导群体的角色（EPAG）

RarERN Path: a methodology towards the optimisation of patients’ care pathways in rare and complex diseases developed within the European Reference Networks

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