Rare Disease Diversity Coalition formed to end racial disparities in rare disease diagnosis, research and treatment

The Dallas Examiner graphic/Photos courtesy of Pixabay

 

Special to The Dallas Examiner

 

WASHINGTON, D.C. – The Black Women’s Health Imperative hosted its first public meeting of the Rare Disease Diversity Coalition, Feb. 23, to address the challenges faced by marginalized populations and identify potential solutions. Led by the coalition and comprised of a diverse group of health care organizations, patient advocacy groups and industry experts, the group’s mission in the years to come include:

  • 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.
  • Helping to achieve greater equality within the rare disease community.

“Racial bias is entrenched in our health care system and deeply lowers the quality of care for patients of color,” said Dr. Elena Rios, president and CEO of the National Hispanic Medical Association. “RDDC is working to educate, support and empower rare disease patients of color and their caregivers so they can be their own advocates.”

The RDDC was established at a pivotal time, as the United States has continued to grapple with the impact of the COVID-19 pandemic, and the racial disparities that exist regarding infection rates, treatment and access to care.

“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 and Pacific Islander American Health Forum.

The coalition’s initial public meeting commemorated the upcoming international Rare Disease Day and tapped into the collective expertise and experiences of various stakeholders to raise awareness of the work.

The meeting took place virtually Feb. 23. Moderated by Emmy Award-Winning anchor Lesli Foster, it featured participation by leading rare disease experts from top health care organizations including the American Medical Association, National Medical Association, the National Hispanic Medical Association and the Asian and Pacific Islander American Health Forum.

Remarks were offered by Congressman G. K. Butterfield, D-N.C.; Dr. Marcella Nunez-Smith, chair of the White House COVID-19 Health Equity Task Force; and NBA champion Alonzo Mourning, who suffered from a rare kidney disorder called focal segmental glomerulosclerosis and had a double kidney transplant in 2003.

RDDC recently released its 2021 action plan entitled “Charting the Path Forward for Equity in Rare Diseases,” that lays out priorities that the coalition will undertake to address the challenges that rare disease patients of color face. On its website https://www.rarediseasediversity.org, the coalition has resources, patient stories, provides updates on their work and otherwise engages with the rare disease community.

“RDDC has a huge mandate, but our work could not be more important,” said Linda Goler Blount, BWHI president and CEO. “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.”

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