Skip to main content
Donate

About the Coalition

Black Women’s Health Imperative launched the Rare Disease Diversity Coalition™ (RDDC™) to address the extraordinary challenges faced by underserved populations with rare diseases. The Coalition brings together rare disease experts, health and diversity advocates, and industry leaders to identify and advocate for evidence-based solutions to alleviate the disproportionate burden of rare diseases on historically marginalized populations.

About-tb

RDDCTM is focused on reducing health disparities in the rare disease community. The Coalition brings together rare disease experts, patients, health care professionals, diversity advocates, and industry leaders to bring about evidence-based solutions that alleviate the disproportionate burden of rare diseases on marginalized populations.

Our Advisory Council
Our Partners

30M

An estimated 3 Million Americans have a rare disease. 50% are children.

5Y

It can take an average of five years of consultations with over seven clinicians to reach an accurate diagnosis for a rare disease.

10%

Only 10% of rare diseases have a treatment approved by the Food and Drug Administration.

For historically marginalized persons with a rare disease, these challenges are compounded. These populations are underrepresented in genome-wide association studies and clinical research trials, leading to a lack of understanding about effective treatments. Additionally, broader racial disparities in access to affordable care and social determinants of health create significant added barriers.

RDDCTM works towards the following goals:

● Reducing racial disparities in the rare disease community

● Identifying and advocating for evidence-based solutions to alleviate the disproportionate burden of rare diseases on historically marginalized populations

● Helping achieve greater equality within the rare disease community

What We Do

Sign Up for the Latest Updates