Rare Disease and Diversity: Tackling the Disproportionate Burden of Rare Disease in Patients of Color

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  • July 29, 2021

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The past year – marked by the confluence of the racial justice movement and a pandemic disproportionately impacting people of color – has been both challenging and illuminating. Through it all, we emerged more aware of, and determined to address, the ever-present racial inequalities in our healthcare system –  including those in the rare disease arena.

Millions of people are diagnosed annually with a rare disease – a diagnosis that can be daunting. But for decades, people of color were left behind in the research and development of treatments for these conditions and access to care.

Determined to create a paradigm shift, the Black Women’s Health Imperative (BWHI) launched the Rare Disease Diversity Coalition (RDDC) in November 2020. The Coalition has brought together members of advocacy groups, patient groups, industry experts and more to achieve the following goals*: 

  • 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 creation of the RDDC is especially important as patients of color continue to experience  poorer health outcomes more broadly, a reality highlighted by the COVID-19 pandemic. 

We see this initiative as a welcome step in overcoming the difficulties the “minority within the minority” face. With more than 6,800 rare diseases, there is ample opportunity to improve the lives of these patients, especially those facing compounded challenges in accessing care.      

About the Coalition:

The Coalition was formed to “advocate for patients who deal with dual struggles…to be included in the promise of scientific advancements that improve health outcomes and not to be left behind because of their rare condition or their race.” – BWHI, RDDC Action Plan 2020. RDDC has already charted a path forward in their Action Plan for equity in rare disease.

*Source: https://www.prnewswire.com/news-releases/rare-disease-diversity-coalition-formed-to-end-racial-disparities-in-rare-disease-diagnosis-research-and-treatment-301233715.html