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 when race or ethnicity is factored in, the outcomes can shift significantly. Communities of color are often met with barriers from the time of diagnosis that persist as their condition progresses. Unfortunately, these barriers frequently result in unequal care and health outcomes compared to other populations. Barriers that may contribute include distrust in the healthcare system, ineffective patient-provider relationships, lack of access to specialty care, minimal participation in clinical trials, inadequate testing, limited access to health education resources, socioeconomic status, environmental conditions, and other psychosocial factors.

Rare Melanin is a nonprofit developed to center and amplify Black experiences in rare disease and to raise awareness about the barriers that prevent Black patients and families from achieving optimal health.

At Rare Melanin, we believe every individual, regardless of race or background, deserves high-quality care. We believe in the power of community and the strength that comes from sharing our stories and lived experiences. By amplifying Black voices in healthcare, we aim to drive meaningful change and build a healthcare system that is more responsive, compassionate, and just.

Join us as we continue to uplift Black experiences in rare diseases and beyond.