How to Get Researchers to Notice an Ultra-Rare Disease
It doesn't help that Erdheim-Chester is notoriously difficult to diagnose and therefore, say researchers, most likely under- or mis-diagnosed. Only when there's a mass or lesion to study will pathologists look for identifying markers on cells -- if they even suspect ECD.
researchers notice ultra rare disease help erdheim chester notoriously difficult diagnose researcher likely under mis diagnose mass lesion study pathologist look identify marker cell suspect ecd