“Health is more than absence of disease; it is about economics, education, environment, empowerment, and community. The health and well being of the people is critically dependent upon the health system that serves them. It must provide the best possible health with the least disparities and respond equally well to everyone.”
- Joycelyn Elders, MD, Former United States Surgeon General
Rare Disease and the Black Community
There is an old adage that says, “When white folks catch a cold, Black folks catch pneumonia.” It essentially means when bad things happen to white people, worse things happen to Black people and other communities of color. The same logic can be applied to rare diseases, conditions that impact fewer than 200,000 people.
According to the National Institutes of Health (NIH) ethnic and racial minorities may experience a higher incidence and prevalence of rare diseases than the general population for a variety of reasons, genetic and otherwise. Rare diseases are often difficult to diagnose and can be challenging to manage for any person, but factor in race or ethnicity and the results can shift significantly. Communities of color are often met with many barriers from the time of diagnosis and continue even as their condition progresses. Unfortunately, such barriers can frequently lead to disparate care and health outcomes when compared to other non-communities of color. Barriers that may contribute to disparate care and health outcomes or health disparities include, but are not limited to: distrust in the healthcare system, ineffective patient-provider relationships, lack of access to specialty care, minimal participation in clinical trials, inadequate testing, insufficient access to health education resources, socioeconomic status, environmental conditions as well as other psychosocial barriers.
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.
At Rare Melanin, we believe that diversity is not just a buzzword; it's a fundamental necessity in healthcare. We believe that every individual, regardless of their race or background, deserves access to equitable and inclusive care. We believe in the power of community and the strength that comes from sharing our stories and experiences. We believe that by amplifying Black voices in healthcare, we can drive meaningful change and create a more just and compassionate healthcare system for all.
Join us as we advocate for diversity, equity, and inclusion in rare diseases and beyond.
