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One of the hardest lessons I learned after Rosie’s Dravet syndrome diagnosis wasn’t medical. It was realizing that nobody was going to hand me a roadmap. Nobody was going to tell me exactly what to do, which doctor to call, or how to build a life after diagnosis. I’m talking about Dravet syndrome because it’s Dravet Awareness Month, but I know families navigating rare diseases, medical complexity, disability, cancer, genetic conditions, and countless other diagnoses understand this feeling too.

One of the hardest lessons I learned after Rosie’s Dravet syndrome dia…

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