Global Genes has partnered with the Rare Disease Diversity Coalition (DRDC) to advance health equity for rare disease patients and caregivers in under-represented communities of color.
âFor patients with a rare disease, the challenges are many – and for people of color with a rare disease, these challenges are compounded by systemic barriers to rapid diagnosis and effective treatments,â Linda Blount, President and CEO of Black Women’s Health Imperative (BWHI) said in a press release.
The BWHI is a non-profit organization focused on promoting health equity for black women. In 2020, he launched DRDC to advocate for evidence-based solutions to racial and ethnic disparities in rare disease communities.
âThrough this partnership with Global Genes, we aim to raise awareness and contextualize these challenges and take action with the wider rare disease community and others to address them,â said Blount.
Global Genes and DRDC will collaborate on three projects.
They will jointly host the RARE Health Equity Summit, which will be held November 17-19 in Philadelphia. The event will bring together rare disease stakeholders and foster discussions on: the challenges facing underserved / underrepresented patient communities in obtaining appropriate diagnoses, ways to reduce racial disparities in healthcare and the need to create research programs that better include minority patients (more inclusive research programs).
The two non-profit organizations will also collaborate on the RARE Data & Evidence Inclusiveness initiative. This data collection / sharing project seeks to detail the experiences of patients with rare diseases of color, tracking diagnosis, care and treatment outcomes. It will monitor trends and improvements in outcomes of care over time.
The third project, called the Know Your Family History Initiative, hopes to raise awareness about the importance of knowing your family medical history. The 18-month patient engagement, education, and data collection and sharing project will highlight the challenges of getting an accurate diagnosis. This initiative will help promote better access to research and appropriate care for minority patients with rare diseases.
Patients of color are under-represented in diagnostic efforts, genome-wide association studies and clinical research trials, resulting in a lack of knowledge about effective treatments for these minority groups, according to the researchers. two non-profit organizations.
âWe have a unique opportunity to help level the playing field in rare diseases,â said Craig Martin, CEO of Global Genes.
“First, we need to identify and highlight areas where our approaches to diagnostics, research, drug development, treatment and patient engagement leave out communities of color and others. underserved populations, âMartin added. âThen we need to work together as a community to reach out, break down barriers, embrace and include those who have been left behind, and collaborate to ensure that other key stakeholders do the same. “
More than 400 million people around the world are affected by rare diseases, according to the organization.