Black Women’s Health Imperative Announces the Rare Disease Diversity Coalition’s ‘RISE for RARE’ Campaign

WASHINGTON, DC – Today, the Black Women’s Health Imperative (BWHI) announced the launch of a comprehensive multi-channel campaign entitled RISE for Rare. This campaign is the first large scale activation of BWHI’s Rare Disease Diversity Coalition that was formed in May 2020. The purpose of the RISE for Rare 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 is led by BWHI and a steering committee comprised of industry, advocacy and community leaders with the support of the founding sponsor Travere Therapeutics, Inc., a biopharmaceutical company dedicated to identifying, developing, and delivering life-changing therapies to people living with rare disease.  The 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. 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,” said Linda Goler Blount, BWHI President and CEO.
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.
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