Half of the Day She's a Diversity Champion, the Other Half a Rare Disease Mom and Caregiver with Yosr Hamza

Once Upon A Gene · Jul 7, 2022 · 35m

ONCE UPON A GENE - EPISODE 142

Half of the Day She's a Diversity Champion, the Other Half a Rare Disease Mom and Caregiver with Yosr Hamza

Yosr Hamza is a lawyer, caregiver, and mom and she joins us to talk about what it's like to be a parent to a child with a rare disease in the Middle East, where rare disease isn't as accepted or normalized.

EPISODE HIGHLIGHTS

How have you navigated having a child with a rare disease and discovered your powerful voice to embrace your child?

For an entire year, I didn't share my secret that my son had a rare disease outside of my family. I was my own judge…