From Vision to Action: National Bleeding Disorders Foundation’s Roadmap for Achieving Health Equity, Diversity, and Inclusion

Background: 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 blo...

Full description

Saved in:
Bibliographic Details
Main Authors: Keri L. Norris, Marissa Melton, Karina Lopez, Dawn Rotellini, Leonard A. Valentino
Format: Article
Language:English
Published: Mary Ann Liebert 2025-02-01
Series:Health Equity
Subjects:
Online Access:https://www.liebertpub.com/doi/10.1089/heq.2024.0146
Tags: Add Tag
No Tags, Be the first to tag this record!
_version_ 1850138843795161088
author Keri L. Norris
Marissa Melton
Karina Lopez
Dawn Rotellini
Leonard A. Valentino
author_facet Keri L. Norris
Marissa Melton
Karina Lopez
Dawn Rotellini
Leonard A. Valentino
author_sort Keri L. Norris
collection DOAJ
description Background: 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. Methods: 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. Results: 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. Conclusion: 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.
format Article
id doaj-art-d8a08f2e4d8644fa8717429df85218e4
institution OA Journals
issn 2473-1242
language English
publishDate 2025-02-01
publisher Mary Ann Liebert
record_format Article
series Health Equity
spelling doaj-art-d8a08f2e4d8644fa8717429df85218e42025-08-20T02:30:30ZengMary Ann LiebertHealth Equity2473-12422025-02-019114416010.1089/heq.2024.0146From Vision to Action: National Bleeding Disorders Foundation’s Roadmap for Achieving Health Equity, Diversity, and InclusionKeri L. Norris0Marissa Melton1Karina Lopez2Dawn Rotellini3Leonard A. Valentino4National Bleeding Disorders Foundation, New York, New York, USA.National Bleeding Disorders Foundation, New York, New York, USA.National Bleeding Disorders Foundation, New York, New York, USA.National Bleeding Disorders Foundation, New York, New York, USA.National Bleeding Disorders Foundation, New York, New York, USA.Background: 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. Methods: 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. Results: 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. Conclusion: 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.https://www.liebertpub.com/doi/10.1089/heq.2024.0146healthequitydiversityinclusionbleeding disorderscommunity
spellingShingle Keri L. Norris
Marissa Melton
Karina Lopez
Dawn Rotellini
Leonard A. Valentino
From Vision to Action: National Bleeding Disorders Foundation’s Roadmap for Achieving Health Equity, Diversity, and Inclusion
Health Equity
health
equity
diversity
inclusion
bleeding disorders
community
title From Vision to Action: National Bleeding Disorders Foundation’s Roadmap for Achieving Health Equity, Diversity, and Inclusion
title_full From Vision to Action: National Bleeding Disorders Foundation’s Roadmap for Achieving Health Equity, Diversity, and Inclusion
title_fullStr From Vision to Action: National Bleeding Disorders Foundation’s Roadmap for Achieving Health Equity, Diversity, and Inclusion
title_full_unstemmed From Vision to Action: National Bleeding Disorders Foundation’s Roadmap for Achieving Health Equity, Diversity, and Inclusion
title_short From Vision to Action: National Bleeding Disorders Foundation’s Roadmap for Achieving Health Equity, Diversity, and Inclusion
title_sort from vision to action national bleeding disorders foundation s roadmap for achieving health equity diversity and inclusion
topic health
equity
diversity
inclusion
bleeding disorders
community
url https://www.liebertpub.com/doi/10.1089/heq.2024.0146
work_keys_str_mv AT kerilnorris fromvisiontoactionnationalbleedingdisordersfoundationsroadmapforachievinghealthequitydiversityandinclusion
AT marissamelton fromvisiontoactionnationalbleedingdisordersfoundationsroadmapforachievinghealthequitydiversityandinclusion
AT karinalopez fromvisiontoactionnationalbleedingdisordersfoundationsroadmapforachievinghealthequitydiversityandinclusion
AT dawnrotellini fromvisiontoactionnationalbleedingdisordersfoundationsroadmapforachievinghealthequitydiversityandinclusion
AT leonardavalentino fromvisiontoactionnationalbleedingdisordersfoundationsroadmapforachievinghealthequitydiversityandinclusion