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That workshop sounds really fascinating. My late mother had a very rare lysosomal metabolic disorder, and while she didn’t expect every medical professional she might encounter to be highly knowledgeable about her condition, still it was obviously important background info, so she had to develop multiple ways of introducing the subject, so that she could basically cycle through different terminologies until she hit on one that triggered recognition with whoever she was talking to. Perhaps today’s digitized medical records have alleviated that problem considerably(?) so that now the problem is more relaying the proper terminology to the patients, but in those days, for some diseases at least, the confusion flowed both ways.