Rare Disease Diversity Coalition Formed To End Racial Disparities In Rare Disease Diagnosis, Research, And Treatment
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.
"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.
NBA Champion Alonzo Mourning, White House COVID Health Equity Task Force Chair
The coalition's first public meeting, on February 23rd in honor of the upcoming international Rare Disease Day, reports on the work being done by the members of the coalition to promote awareness and address the inequities in healthcare for people of color. The meeting was moderated by Emmy Award-Winning anchor Lesli Foster and featured leading rare disease experts from top healthcare organizations including the American Medical Association, National Medical Association, National Hispanic Medical Association, and Asian & Pacific Islander American Health Forum. Remarks were made 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 shared his experience from his diagnosis of focal segmental glomerulosclerosis, a rare kidney disorder, to his double kidney transplant in 2003.
RDDC just released its 2021 Action Plan, entitled "Charting the Path Forward for Equity in Rare Diseases." The plan lays out priorities that the coalition will undertake to address the challenges that face rare disease patients of color. You can find more information about their efforts at www.RareDiseaseDiversity.org. The RDDC website shares resources, patient stories, and updates on the Coalition’s work.
"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.
