Rare As One Partner

Black Women’s Health Imperative, Rare Disease Diversity Coalition

The Rare Disease Diversity Coalition (RDDC) is a partnership of rare disease experts, patient and provider organizations, and health equity advocates working to address the extraordinary challenges faced by rare disease patients of color. Launched in 2020, the RDDC and its partners are committed to being a catalyst for rare disease patients of color and the extraordinary challenges they face, seeking solutions on diversity in research and clinical trials, in the healthcare workforce, improving access and coverage, and increasing provider and patient engagement. As rare disease patients, they strive to be included (and not forgotten) in healthcare; and, as people of color, they fight daily for equity—against the reality of historic bias and its lingering disparate social, economic, and health effects. RDDC seeks to identify and advocate for evidenced-based solutions to alleviate the disproportionate burden of rare diseases on these communities.