Composed of influential health experts and patient advocacy executives, including leaders from the Black Women's Health Imperative, other ethnic minority health groups, rare disease organizations, and medical associations, the Rare Disease Diversity Coalition (RDDC) was formed in 2020 to help address the extraordinary challenges faced by rare disease patients of color.
During its April 27 steering committee meeting, the RDDC will continue its work to create solutions to impact the significant health disparities faced by communities of color, with a special emphasis on the inequities that rare disease patients of color experience. The group will discuss its efforts to increase the participation of communities of color in rare disease research and clinical trials by addressing regulatory flexibility.
The meeting will discuss the coalition's ongoing work to implement the priorities outlined in its 2021 "Charting the Path Forward for Equity in Rare Diseases" report and action plan, aimed at the barriers that rare disease patients of color face.
"I, along with my fellow RDDC steering committee members, look forward to hearing Dr. Frederick's remarks on advancing health equity for communities of color. His robust body of research focusing on narrowing racial, ethnic, and gender inequities in cancer care outcomes, coupled with his sickle cell anemia patient experience and advocacy, will enable him to present a uniquely substantive and empathetic perspective with the RDDC on April 27," said Linda Goler Blount, president and CEO of Black Women's Health Imperative.
The Rare Disease Diversity Coalition supports the work of HBCU medical schools, such as Howard University, in helping to bring about systematic policy changes to address the racial inequities experienced by people of color with rare diseases.
About the Rare Disease Diversity Coalition
More than 30 million—or 1 in 10—Americans have a rare disease. For rare disease patients of color, racial disparities have caused a crisis. The Black Women's Health Imperative launched the Rare Disease Diversity Coalition to address the extraordinary challenges faced by rare disease patients of color. The RDDC brings together rare disease experts, health, and diversity advocates with industry leaders to identify and advocate for evidenced-based solutions to alleviate the disproportionate burden of rare diseases on communities of color. To learn more, visit: www.RareDiseaseDiversity.org
About the Black Women's Health Imperative
The Black Women's Health Imperative is a national non-profit organization dedicated to advancing health equity and social justice for Black women across generations, through policy, advocacy, education, research, and leadership development. The organization identifies the most pressing health issues that affect the nation's 22 million Black women and girls and invests in the best of the best strategies that will accomplish its goals. www.bwhi.org
MEDIA CONTACT: Priscilla Clarke, Clarke PR, (202) 723-2200, [email protected]
SOURCE Rare Disease Diversity Coalition
Related Links
http://rarediseasediversity.org
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