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从愿景到行动:国家出血障碍基金会为实现健康平等,多样性和包容性的路线图
Keri L Norris1, Marissa Melton1, Karina Lopez1
1National Bleeding Disorders Foundation, New York, New York, USA.
国家出血障碍基金会 (NBDF) 制定了一项战略计划,以解决影响遗传性血液和出血障碍 (BDs) 患者健康平等的社会决定因素. 该计划旨在拆除障碍,促进罕见障碍社区的繁荣.
科学领域:
- 公共卫生 公共卫生
- 健康 公平 卫生 公平
- 罕见疾病 罕见疾病
背景情况:
- 国家出血障碍基金会 (NBDF) 承认,患有遗传性血液和出血障碍 (BDs) 的人面临的日常挑战.
- NBDF认识到解决社会决定因素,差距和健康不平等的关键需要,以使 BDs 社区能够勃发展.
研究的目的:
- 制定一个以健康公平,多样性和包容为重点的战略方向,为遗传性BDs社区.
- 识别和解决健康的特定社会决定因素,这些因素阻碍了这一群体的健康公平.
主要方法:
- 与区域,国家和国际合作伙伴合作开发.
- 利用有限的可用数据,广泛的社区咨询和彻底的景观扫描.
- 确定了影响遗传性BD社区健康的关键社会决定因素.
主要成果:
- 开发了一种利益相关者 (个人,社区,组织,机构) 参与模式,以拆除卫生公平障碍.
- 制定了全面的优先事项和战略,以推进健康公平.
- 提供领导力,工具,资源和专业知识,以支持利益相关者.
结论:
- 开发的方法旨在根据特定的需求和能力量身定制.
- 这种模式可以被其他罕见疾病社区采用,以创建自己的健康公平,多样性和包容性战略方向.
- 该倡议旨在在罕见疾病群体中推进社会正义.
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