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during informal interviews in the course of an ethnographic study on intergenerational dialogue between individuals with neurofibromatosis and their parents, many members of Canadian neurofibromatosis associations have stated that they continue to be told the condition that afflicts them or their children is "elephant man's disease." Today, even though well-established clinical criteria make it possible to diagnose and differentiate the 2 diseases, the confusion between neurofibromatosis type 1 (NF1) and elephant man's disease persists in both the media's and physicians' representations.

Neurofibromatosis Type 1: Persisting Misidentification of the "Elephant Man" Disease