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  • Writer's pictureAreeg Sweis

How the Rare Disease Diversity Coalition advocates for Minority Rare Disease Patients

Often, many minority disease patients deal with health inequity regarding their healthcare accessibility and treatment. Fortunately, the Rare Disease Diversity Coalition was created to help underrepresented rare disease patients in America receive better diagnoses and treatment. Continue reading to learn more about Rare Disease Diversity Coalition's initiatives, including their RISE for Rare campaign.

The Black Women’s Health Imperative launched the Rare Disease Diversity Coalition in 2020 to advocate for rare disease patients of color. As stated by their official website, the Rare Disease Diversity Coalition collaborates with several advocates, experts, and industry leaders to “identify and advocate for evidence-based solutions to alleviate the disproportionate burden of rare diseases on communities of color.”

Rare disease minority patients are overlooked for clinical trials and genome-associated studies, which can hinder the success of an approved treatment if it's not tested on races and ethnicities with a different genetic build-up. Aside from research, there are other barriers, such as low household income, healthcare affordability, access to health insurance covering rare diseases, and many more that obstruct minority patients' ability to receive proper medical care.

The coalition’s first major campaign, RISE for Rare, uses social media to help "raise awareness around the health disparities communities of color face with respect to rare disease and bring attention to the misunderstood symptoms that often delay diagnosis" (PR Newswire). Led by the Black Women’s Health Imperative and a steering committee of industry leaders, the Rare Disease Diversity Coalition’ RISE for Rare campaign aims to achieve the following goals:

  • Limit the racial disparities faced by rare disease patients of color

  • Recognize and advocate for “evidence-based solutions to alleviate the disproportionate burden of rare diseases on communities of color

  • Assist in achieving improved health equity and equality amongst the rare disease community (Rare Disease Diversity Coalition)

The RISE for Rare initiative is one of many advocacies fighting for rare disease patients across the globe. The Rare Disease Diversity Coalition's RISE for Rare campaign unique is their objective for helping the most underrepresented population of rare disease patients, the people of color.

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