Over the past several years, bleeding disorders advocates and other community leaders have worked together to create the National Research Blueprint for a new U.S. Bleeding Disorders Research Collaborative. Its goal is for research to be more inclusive and to better meet the needs of all people with inheritable bleeding disorders. The National Research Blueprint was developed through the support of the U.S. National Bleeding Disorders Foundation.
The Bleeding Disorders Research Collaborative will be driven by people with inheritable bleeding disorders, and their impacted caregivers and family members; a group referred to as Lived Experience Experts. A Research Ambassador Program will train diverse Lived Experience Experts to contribute to all research teams and projects. Their insights will be integrated into all areas including, but not limited to, choosing and designing studies, running them, and sharing information about research with the community. Researchers will be trained to communicate and collaborate effectively with Lived Experience Experts, so they can work well together.
Everything the Bleeding Disorders Research Collaborative does will firmly apply the principles of health equity, diversity, and inclusion. The National Bleeding Disorders Foundation and the Bleeding Disorders Research Collaborative must partner with others who share this vision for research that prioritizes and respects the needs and perspectives of all people with inheritable bleeding disorders. Together they must secure policies and funding supporting this way of doing research. The success of the proposed Bleeding Disorders Research Collaborative requires the collective backing and engagement of the entire community: researchers, healthcare providers, Lived Experience Experts, advocacy organizations, regulators, policymakers, funders, and industry.