Handling Challenges of Being a Rare Caregiver and Parent: Courageous Parents Network Webinar

May 30, 2024

Do you want to work? Do you have to work? How do you balance caregiving and work?

Global Genes’ own Daniel DeFabio, Senior Director of Community Engagement, joined rare disease parents for a webinar with Courageous Parents Network on how parents of children diagnosed with a rare disease handle multiple responsibilities as caregivers, as well as their emotional needs. They discuss choosing not to work outside the home, feeling there is no choice, and trying to find a work life and caregiver life balance.

Jennifer Siedman
Rare Mom
Director of Community Engagement, Courageous Parents Network


Blyth Lord
Rare Mom
Founder, Courageous Parents Network

Emily Callaway
Rare Mom

Daniel DeFabio
Rare Dad
Director of Community Engagement, Global Genes

Naomi Williams
Rare Mom
Life Doula

More about the panel

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