Evolution of the BDRC initiative. The 4 stages of the BDRC initiative are shown schematically: initial visioning and community engagement, identification of research priorities, infrastructure and governance development, and future goals for cross-condition leadership in research. The model anticipates long-term impact through broader adoption of LEE leadership in rare disease research. The first phase of the project, implementation, began with “blue sky thinking,” bringing together healthcare professionals, community leaders, industry and federal partners, and, most importantly, LEEs. In the second phase, a steering committee worked with interdisciplinary WGs to define the principles, scope, and research priorities addressing the community’s most pressing needs. As part of the process, they identified resource and infrastructure requirements to launch and scale an integrated research pathway with opportunities for community participation at every step. A blueprint emerged, designed around the principle that LEEs serve as essential partners in research closely integrating health justice including equity, diversity, inclusion, acceptance and belonging.