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Lived Experience in Research: The Unique Role of the Ervaringsdeskundige

Recently, I stumbled across an old name badge while tidying up. It was from my first-ever speaking engagement, 10 years ago. Back then, I was a parent fresh off the rollercoaster of a rare TAPS diagnosis. My twins were born prematurely, and the months that followed were filled with uncertainty and fear. At the time, I didn’t see myself as any kind of “expert.” I was a parent trying to make sense of an overwhelming situation that I had been dropped into around 12 months previously.