Today, the Black Women’s Health Imperative (BWHI) hosts the first public meeting of the Rare Disease Diversity Coalition (RDDC). RDDC seeks to address the pressing challenges faced by marginalized populations and identify potential solutions. Led by BWHI and comprised of a diverse group of healthcare organizations, patient advocacy groups, and industry experts, the RDDC is poised to achieve action in the years to come by:
- Reducing racial disparities in the rare disease community;
- Identifying and advocating for evidence-based solutions to alleviate the disproportionate burden of rare diseases on communities of color; and
- Helping to achieve greater equality within the rare disease community
The RDDC was established at a pivotal time, as the United States continues to grapple with the impact of the COVID-19 pandemic, and the glaringly evident racial disparities that exist regarding infection rates, treatment and access to care.
The coalition’s initial public meeting, will commemorate the upcoming international Rare Disease Day, and will tap into the collective expertise and experiences of various stakeholders to raise awareness of the work. The meeting will take place virtually today, February 23, 2021, from 1:00 P.M.-3:00 P.M. EST. Moderated by Emmy Award-Winning anchor Lesli Foster, the meeting will feature participation by leading rare disease experts from top healthcare organizations including the American Medical Association, National Medical Association, the National Hispanic Medical Association, and the Asian & Pacific Islander American Health Forum. Remarks will also be offered by Congressman G. K. Butterfield (D-NC), Dr. Marcella Nunez-Smith, Chair of the White House Covid-19 Health Equity Task Force, and NBA champion Alonzo Mourning, who suffered from focal segmental glomerulosclerosis, a rare kidney disorder, and had a double kidney transplant in 2003.
RDDC has just released its 2021 Action Plan entitled “Charting the Path Forward for Equity in Rare Diseases”, that lays out priorities which the coalition will be undertaking to address the challenges that rare disease patients of color face. At RareDiseaseDiversity.org, RDDC now has a website to share resources, promote patient stories, provide updates on their work, and otherwise engage with the rare disease community.
“RDDC has a huge mandate, but our work could not be more important. As COVID-19 sets its sights on people of color and patients living with rare and chronic diseases, the individuals who exist at the intersection of these two realities need dedicated advocacy and policy change now more than ever,” said Linda Goler Blount, BWHI President and CEO.
“Racial bias is entrenched in our healthcare system and deeply lowers the quality of care for patients of color. RDDC is working to educate, support and empower rare disease patients of color and their caregivers so they can be their own advocates,” said Dr. Elena Rios, President & CEO of the National Hispanic Medical Association.
“The work of RDDC is critical in order to address the health inequities that people of color with rare disease experience. RDDC is focused on raising awareness around these health inequalities, reducing racial disparities and advocating for evidence-based solutions,” said Juliet K. Choi, Chief Executive Officer of Asian & Pacific Islander American Health Forum.
