"You get left behind and lost in a complex world of rare care": equity in access to rare disease care-learnings from the Australian Rare Disease Awareness, Education, Support, and Training (RArEST) project.
作者信息
Palmer Elizabeth Emma, Recsei Krista, McKnight Lauren, Roberts Natalie, Jaffe Adam
机构信息
Discipline of Paediatrics and Child Health, School of Clinical Medicine, Faculty of Medicine and Health, University of New South Wales Sydney, New South Wales, Australia; Sydney Children's Hospitals Network, Randwick, New South Wales, Australia.
Discipline of Paediatrics and Child Health, School of Clinical Medicine, Faculty of Medicine and Health, University of New South Wales Sydney, New South Wales, Australia.
出版信息
EBioMedicine. 2025 May;115:105710. doi: 10.1016/j.ebiom.2025.105710. Epub 2025 Apr 15.
Abstract
摘要
Zotero 插件