Previous work led by the U.S. National Bleeding Disorders Foundation (NBDF) concluded that Lived Experience Experts (LEEs), people, who live with inheritable bleeding disorders and their impacted caregivers and family members, develop unique knowledge about their disorder. It also recommended a national research collaborative guided by the principles of health equity, diversity, and inclusion (HEDI). Now, in four accompanying papers, seven expert working groups propose Research and Development, Workforce, Infrastructure, LEE, HEDI, Community Engagement, and Policy elements for a new Bleeding Disorders Research Collaborative. These groups all included lots of input from LEEs and HEDI experts, as well as researchers and healthcare providers. They made sure the insights and needs of all people with inheritable bleeding disorders were valued in every part of the plan.
In this paper, we present an overview of the whole collaborative. It will start out small and develop by learning from every project. The infrastructure and workforce will grow progressively; partnerships will be key in bringing together all the resources and expertise needed. LEE insights will be integrated into every stage of every research project and in every part of the organization and governance. HEDI principles will be respected in every study and in how the collaborative runs. Education, training, and mentorship will help everyone gain the skills they need to work well together. Shared leadership of the collaborative will ensure transparency, accountability, and the guiding principles of mutual respect, authentic partnership, and respectful communication. If the inheritable bleeding disorders community joins forces and works together, we can accelerate research that advances health justice for all.