The Black Women’s Health Imperative (BWHI) recently announced the launch of a comprehensive multi-channel campaign entitled RISE for Rare. The purpose of the campaign is to build awareness around the health disparities, specifically with respect to rare disease, that many communities of color face. BWHI, through RISE for Rare, aims to ultimately reduce the time from symptoms to diagnosis, enhance the quality of care and improve health outcomes for patients of color.
The Rare Disease Diversity Coalition was established at a pivotal time, as the country continues to grapple with the impact of the ongoing COVID-19 pandemic and the painfully evident disparities that exist among communities of color regarding infection rates, treatment and access to care.
“This campaign and the work of the Coalition is critical in order to 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,” said Dr. Garfield Clunie, National Medical Association (NMA) national treasurer and board member.
“In order to address these inequities, we must fully understand the impact on diverse populations by committing more support, funding and resources to research while we simultaneously strive to dismantle other systemic structures that support inequity and injustice,” said Dr. Elena Rios, President & CEO of the National Hispanic Medical Association.
“There are significant barriers to the development of effective therapeutics for patients of color,” said Linda Goler Blount, BWHI President and CEO. “Lack of researchers of color and lack of participants of color in clinical trials mean evidence-based medicine is applied to people who had nothing to do with the creation of the evidence. However, the number one reason patients of color are not included in clinical trials is because they are not asked by their physicians. RISE for Rare is a powerful first step to ensuring patients of color are included in research and that physicians and researchers understand the importance of that inclusion.”
The RISE for Rare campaign will utilize an interactive program to focus on raising awareness on health inequalities in communities of color, reducing racial disparities and advocating for evidence-based solutions, with the goal of eradicating systemic inequities. For more information, visit www.bwhi.org
