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Representation in rare disease care isn’t just about seeing yourself in the room. It changes everything: diagnosis, trust, and follow-through.
When Black patients see providers who understand their culture and history, they’re more likely to get accurate diagnoses earlier. Misdiagnosis drops. Treatment plans stick. Lives change.
Too often, rare diseases like hereditary ATTR amyloidosis fly under the radar in Black communities because of a lack of representation among healthcare professionals and researchers.