Norris Keri L, Melton Marissa, Lopez Karina, Rotellini Dawn, Valentino Leonard A
National Bleeding Disorders Foundation, New York, New York, USA.
Hemophilia and Thrombophilia Center, Rush University Medical Center, Chicago, Illinois, USA.
Health Equity. 2025 Mar 11;9(1):144-160. doi: 10.1089/heq.2024.0146. eCollection 2025.
The National Bleeding Disorders Foundation (NBDF) consistently hears from lived experience experts about daily challenges preventing them from leading their best life and thriving physically, mentally, and emotionally. Dedicated to enabling people and families impacted by inheritable blood and bleeding disorders (BDs) to thrive, NBDF recognized that the impact of social determinants, disparities, and inequities of health must be addressed explicitly to achieve their mission.
NBDF developed a health equity, diversity, and inclusion strategic direction for the coming decade in the context of collaboration with regional, national, and international partners. Drawing upon limited available data, extensive community consultation, and a thorough landscape scan, NBDF identified specific social determinants of health preventing health equity in the inheritable BDs community.
NBDF developed a model detailing the engaging, empowering, and elevating work individual, community, organizational, and institutional stakeholders must undertake to dismantle health equity barriers. Overarching priorities and strategies were established, providing leadership, and support was offered in the form of tools, resources, and expertise.
Designed to be tailored to needs and capacities, this approach may be applied by other rare disorder communities to develop and operationalize their own health, equity, diversity, and inclusion strategic direction to advance social justice.
美国国家出血性疾病基金会（NBDF）不断从有实际生活经验的专家那里听到他们在日常生活中面临的挑战，这些挑战使他们无法过上最好的生活，无法在身体、心理和情感上蓬勃发展。NBDF致力于帮助受遗传性血液和出血性疾病（BDs）影响的个人和家庭蓬勃发展，认识到必须明确解决社会决定因素、健康差距和不平等对实现其使命的影响。
NBDF在与区域、国家和国际合作伙伴合作的背景下，为未来十年制定了健康公平、多样性和包容性战略方向。NBDF利用有限的现有数据、广泛的社区咨询和全面的环境扫描，确定了阻碍遗传性BDs社区实现健康公平的具体健康社会决定因素。
NBDF开发了一个模型，详细说明了个人、社区、组织和机构利益相关者为消除健康公平障碍必须开展的参与、赋权和提升工作。确立了总体优先事项和战略，提供了领导力，并以工具、资源和专业知识的形式提供了支持。
这种方法旨在根据需求和能力进行调整，其他罕见病社区也可应用该方法来制定和实施自己的健康、公平、多样性和包容性战略方向，以推进社会正义。
