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The Stigma of Rare Disease: How Do You Tell People About Your Condition?
by Janet Mills Posted on April 17, 2013 at: globalgenes.org/the-stigma-of-rare-disease-how-do-you-tell-people-about-your-condition Many rare diseases, like my own, have hard-to-pronounce names that evoke fear or boredom from people first hearing them. In my experience, eyes glaze over around the middle of “Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy.” Giving the acronym “