Opinion: My son's rare disease was renamed ASMD. Why are people still calling it Niemann-Pick?

Recently, the smoldering embers of conflict in my family’s rare disease community have burst into flames over the use of an eponym: Niemann-Pick.

An eponym is a name derived from a person who first discovered a disease or who was otherwise closely associated with its identity. Such was the case for a neurodegenerative condition observed in a child and documented by Alfred Niemann in 1914. He believed that the child’s condition was a variant of Gaucher disease, discovered in the 1880s. In 1926, Ludwig Pick, a physician known for his stellar skill in lab science, discovered that the condition Niemann identified was actually a separate disorder, distinct from Gaucher. The new disease was given the eponym Niemann-Pick.

Read the rest…