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Latest / The KCNA2 & Rare Epilepsy’s Podcast

From Panic to Purpose: How One Mom Became a Rare Disease Advocate with Karen Morici

What happens when your child receives a diagnosis so rare that even the doctors caring for them have little experience with it?

In this episode of The KCNA2 & Rare Epilepsy Podcast, Dr. Nancy Musarra sits down with Karen Morici, a rare disease mom and advocate whose son, Dominic, lives with PMM2-CDG, a congenital disorder of glycosylation.

Karen shares the emotional journey from noticing that something was different with Dominic as an infant, to receiving a devastating rare disease diagnosis, Googling it alone in a hospital room, and experiencing her first panic attack.

She also talks openly…

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