Congressman G.K. Butterfield (NC-1), a Co-Chair of the Rare Disease Congressional Caucus and 24th Chair of the Congressional Black Caucus, introduced a resolution recognizing the extraordinary challenges faced by patients of color with rare diseases and the need to identify and promote evidence-based solutions to alleviate the disproportionate burden of rare diseases on these communities, as well as supporting Rare Disease Day. Congressman Bobby Rush (IL-1) also expressed support for the advocates, medical professionals, and caregivers who dedicate their lives to providing resources to those diagnosed with rare diseases and recognized the Rare Disease Diversity Coalition (RDDC) for their efforts. Both Congressmen are poised to read statements into the Congressional Record on Rare Disease Day bringing to light the specific challenges faced by persons of color living with rare disease.
The goal of Rare Disease Day is to raise public awareness about the estimated 25-30 million Americans who have been diagnosed with rare diseases. A disease is considered rare when it affects fewer than 200,000 people. It is estimated that the rare disease community is comprised of over 7,000 individual diseases, and rare disease patients of color, in particular, experience profound effects from health inequities. The global observance takes place on the last day of February each year.
In observance of Rare Disease Day, the RDDC hosted a series of virtual conversations consisting of two panels on February 28. The first panel, “Knowledge is Power”, featured a conversation with famed brothers Lahmard, Larenz, and Larron Tate on sickle cell and other rare diseases. The second panel “How to Advocate for Your Health as a BIPOC Patient”, will focus on how to get access to early detection and treatment options for rare diseases. These virtual conversations are publicly available here.
“The Black Women’s Health Imperative and RDDC applaud Congressmen Butterfield and Rush as they join us in supporting Rare Disease Day. We will continue fighting to ensure that rare disease patients of color have access to the quality care and resources they need,” said Tammy Boyd, JD, MPH, leader of the RDDC initiative and Black Women’s Health Imperative’s Chief Policy Officer & Counsel.