Balancing Rare Disease Advocacy and Family - Navigating the Complexities and Embracing Imperfections with Nikki Stusick
ONCE UPON A GENE - EPISODE 230
Balancing Rare Disease Advocacy and Family - Navigating the Complexities and Embracing Imperfections with Nikki Stusick
Nikki Stusick is the mom of a child with an initial VUS diagnosis and then a different pathogenic diagnosis. We talk about the complexities of balancing advocacy work, family life, when to choose one over the other and when to take a break.
EPISODE HIGHLIGHTS
Can you tell us about yourself and your diagnostic journey?
I am a mom of three children and my oldest, Theo, was diagnosed a month after his first birthday with a rare condition called…
The skinny
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