ALISO VIEJO, Calif.--(BUSINESS WIRE)--Global Genes, a leading international rare disease advocacy organization, announced the formation of a multi-faceted partnership with the Rare Disease Diversity Coalition (RDDC) aimed at accelerating and advancing health equity for rare disease patients and their caregivers in underrepresented and minoritized communities of color.
“For rare disease patients, there are many challenges – and for people of color with a rare disease, these challenges are compounded by systemic barriers to timely diagnosis and effective therapeutics,” said Linda Blount, President and CEO of Black Women’s Health Imperative. “Through this partnership with Global Genes, we aim to bring awareness and context to what those challenges are and take steps with the entire rare disease community and others to address them.”
Communities of color and minoritized patient communities are often underrepresented in diagnostic efforts, genome-wide association studies and clinical research trials, leading to a lack of understanding about effective treatments. Additionally, disparities in access to affordable care and social determinants of health create significant added barriers.
“We have a unique opportunity to help level the playing field in rare disease,” stated Craig Martin, CEO of Global Genes. “First, we must identify and shine a light on areas where our approaches to diagnosis, research, drug development, treatment and patient engagement are leaving out communities of color and other underserved populations. Then we must work together as a community to reach out, break down barriers, embrace and include those who’ve been left out, and collaborate to ensure other key stakeholders do the same.”
RDDC brings together rare disease experts, health and diversity advocates, and industry leaders to identify and advocate for evidence-based solutions to alleviate the disproportionate burden of rare diseases on communities of color. Their mission aligns with that of Global Genes, which is to eliminate the burdens of rare disease by connecting and empowering the community to be effective on their own behalf, spur innovation, meet essential needs, build capacity and knowledge, and drive equitable progress and access within and across rare diseases.
Global Genes and RDDC will collaborate on the following:
- The RARE Health Equity Summit, taking place November 17-19, 2021, in Philadelphia. Key rare disease constituents will gather with a goal of gaining a better understanding of the persistent gaps in diagnostic challenges for underrepresented and/or minoritized patient communities and to align on how to address health inequities of the rare disease community.
- The RARE Data & Evidence Inclusiveness Initiative (RARE DEI) will create and establish a large-scale information and data gathering initiative to help identify and elucidate the unique experiences, challenges, and outcomes of rare disease patients from communities of color in diagnosis, care and treatment, generating insights, set metrics, and track improvements and trends over time.
- The Know Your Family History Initiative will be an 18-month, multi-channel patient education, engagement, mobilization and data collection and sharing initiative, aimed at building awareness around the importance of knowing your family health history, identifying specific challenges in obtaining an accurate diagnosis, and demonstrating an increase in participation and behaviors supportive of better and more inclusive diagnosis and access to research and care for patients of color within the rare disease community.
About Global Genes®
Global Genes is a 501(c)(3) non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. In pursuit of our mission, we connect, empower, and inspire the rare disease community to stand up, stand out, and become more effective on their own behalf — helping to spur innovation, meet essential needs, build capacity and knowledge, and drive progress within and across rare diseases. We serve the more than 400 million people around the globe and nearly one in 10 Americans affected by rare diseases. If you or someone you love has a rare disease or are searching for a diagnosis, contact Global Genes at 949-248-RARE or visit our Resource Hub.
About the Rare Disease Diversity Coalition
Black Women’s Health Imperative launched the Rare Disease Diversity Coalition to address the extraordinary challenges faced by rare disease patients of color. The Coalition brings together rare disease experts, health and diversity advocates, and industry leaders to identify and advocate for evidence-based solutions to alleviate the disproportionate burden of rare diseases on communities of color. The Rare Disease Diversity Coalition is focused on reducing racial disparities in the rare disease community. The Coalition’s work is led by BWHI and a leadership steering committee comprised of advocacy, community, and industry leaders with the following goals: Reduce racial disparities in the rare disease community, identify and advocate for evidence-based solutions to alleviate the disproportionate burden of rare diseases on communities of color, and help achieve greater equality within the rare disease community.