Tom is a former medical professional (long retired) with experience across many areas including treatment, research and education. But it wasn’t until his own rare disease ended his professional career that he learned what he should have known all along: what patients really care about is NOT treatment plans, cures, and not even “pain/disability” from their disease. These things matter of course, but so does buying groceries, plowing snow, and spending time with family. Starting first as a support group member dealing with his own disease, becoming a community moderator and eventually Co- Executive Director of Ben’s Friends Patient Communities, Tom has interacted with thousands of rare disease patients. From those interactions, he brings a unique perspective on how to truly deal with patient needs and provide “Patient Centricity” in action not just words.