“The time is always right to do what is right.”
– Dr. Martin Luther King Jr.
About
Rare diseases present a formidable challenge in diagnosis and management, and when compounded by considerations of race and ethnicity, the complexities and outcomes can vary significantly. Communities of color often encounter numerous barriers in navigating the path from diagnosis to effective disease management, resulting in avoidable negative health consequences. These barriers include distrust in the healthcare system, suboptimal patient-provider relationships, limited access to specialized care, low participation in clinical trials, inadequate testing, insufficient health education resources, socioeconomic disparities, environmental factors, and various psychosocial challenges.
2020 underscored these disparities, particularly evident in the profound impacts of COVID-19 on marginalized and minoritized communities. The pandemic laid bare systemic inequities within the American justice and healthcare systems, exacerbating existing challenges such as job losses, housing instability, and heightened loneliness. This period also witnessed global calls for social justice and health equity, following the tragic deaths of George Floyd, Breonna Taylor, Ahmaud Arbery, and many others. While some organizations pledged to address these issues, the extent of their follow-through has varied.
Despite these obstacles, our commitment to amplifying collective voices persists, advocating for policies and practices that enhance the overall health and well-being of all individuals. This commitment extends to uplifting the rare disease community, with a specific focus on individuals of Black or African ancestry. The ongoing effort to foster inclusivity and address systemic disparities is crucial in shaping a more equitable future.
Rare Melanin is a nonprofit that was developed to center and amplify Black experiences in rare disease and help create awareness regarding the barriers that prevent Black patients and families impacted by rare disease from obtaining optimal health through the promotion of diversity, equity, and inclusion within healthcare.
