Purdie Rob, Kuran Rasha, Alastruey-Izquierdo Ana, Sati Hatim, Rodriguez-Tudela Juan Luis, Hoenigl Martin, Perfect John, Oladele Rita, Walsh Thomas J, Chiller Tom
MyCARE Foundation, Colorado Springs, CO, USA.
Taskforce of AMR Survivors, World Health Organization, Geneva, Switzerland.
Mycopathologia. 2025 Jan 8;190(1):11. doi: 10.1007/s11046-024-00906-6.
In the healthcare landscape, diseases such as cancer and HIV/AIDS have benefited from the patient's perspective. For fungal diseases, the patient voice remains absent in critical areas such as policy formulation, funding decisions, and research priorities. Patients affected by fungal disease, along with their caregivers and advocacy groups, possess invaluable insights into the challenges and unmet needs they face. By elevating their voices and experiences, policymakers, funding agencies, and researchers can gain a more comprehensive understanding of the multifaceted nature of fungal disease and the urgency of addressing them. This paper addresses the pressing need for a coordinated effort to elevate the patient voice in advocating for improved policies, increased funding, and enhanced research initiatives regarding fungal disease.
在医疗保健领域，癌症和艾滋病毒/艾滋病等疾病已从患者的角度受益。对于真菌疾病而言，在政策制定、资金决策和研究重点等关键领域，患者的声音仍然缺失。受真菌疾病影响的患者及其护理人员和倡导团体，对他们所面临的挑战和未满足的需求有着宝贵的见解。通过提升他们的声音和经历，政策制定者、资助机构和研究人员能够更全面地了解真菌疾病的多面性以及应对这些疾病的紧迫性。本文论述了迫切需要做出协调努力，以提升患者在倡导改善真菌疾病相关政策、增加资金投入和加强研究举措方面的声音。
