Diversity and Cultural Competence in Research

The Rare Disease Diversity Coalition Hosts Diversity and Cultural Competence in Research Webinar

The Rare Disease Diversity Coalition brings together rare disease experts, health, and diversity advocates, and industry leaders to identify and advocate for evidenced-based solutions to alleviate the disproportionate burden of rare diseases on communities of color.

NOTE TO REPORTERS AND EDITORS: Members of the media and public are invited to a webinar on Tuesday, December 13 at 1:00 p.m. ET. To register, please contact Emily Ligon at [email protected].

WASHINGTON, Dec. 13, 2022 /PRNewswire/ — Tomorrow at 1:00 p.m. ET, the Rare Disease Diversity Coalition (RDDC) will host a webinar discussing the importance of cultural competence and diversity in research to reduce health disparities in the rare disease community.

“Communities of color are disproportionately burdened by rare diseases and vastly underrepresented in clinical trials.”

“Communities of color are disproportionately burdened by rare diseases, yet remain vastly underrepresented in clinical trials. As a result, patients of color have limited access to new treatments and medications that reach the market may not work effectively for a diverse patient population,” said Jenifer Ngo Waldrop, executive director of RDDC. “It is vital that the healthcare community closes this gap to ensure equitable care for all.”

Expert panelists will detail roadblocks limiting diversity in clinical research — from physician bias, to cultural and language barriers, to a lack of diversity in clinical trial design and administration — and will explore how to best address these obstacles. Speakers include:

About the Rare Disease Diversity Coalition:

Launched in 2020 by The Black Women’s Health Imperative, RDDC is a partnership of the nation’s leading rare disease experts, patient and provider organizations, and health equity advocates working to address the extraordinary challenges faced by rare disease patients of color. Through research, advocacy, and collaboration, RDDC aims to advance evidence-based solutions to achieve greater equality within the rare disease community. Learn more at www.rarediseasediversity.org.

About the Black Women’s Health Imperative:

The Black Women’s Health Imperative is the first and only national non-profit organization created for and by Black women dedicated to improving the health and wellness of our nation’s 22 million Black women and girls — physically, emotionally, and financially. Our core mission is advancing health equity and social justice for Black women, across their lifespan, through policy, advocacy, education, research, and leadership development. For more information, please visit www.bwhi.org.