Black Women's Health Imperative Awards $600,000 to Fight Rare Disease Disparities
In 2020, the Black Women's Health Imperative launched the Rare Disease Diversity Coalition (RDDC) to address racial and ethnic disparities in rare disease communities. The coalition aims to improve care and representation for people of color with rare diseases, who often face unique challenges and are underrepresented in research.
The RDDC recently awarded $600,000 in grants to tackle these disparities. The funds will support five working groups focusing on key areas: delays in diagnosis, research, provider education, patient support, and government policy. These groups consist of rare disease experts, diversity advocates, and industry leaders committed to reducing disparities.
Projects funded by the grants include a family health history pilot, patient education materials, clinical trial videos, and research into patient diversity in clinical trials. Other initiatives focus on creating an industry guide on inclusive patient materials, cultural sensitivity training, and advocacy policy proposals. Education initiatives such as a medical student webinar series and a rare disease fellowship program are also supported.
With over 30 million Americans affected by rare diseases, and patients of color particularly impacted by racial disparities, the RDDC's work is crucial. The coalition's efforts to improve care and representation for people of color with rare diseases are expected to make a significant difference in their lives.
