Send us a text After a four-month break, we’re back and catching up on everything! In this episode, I sit down with my partner-in-crime (and life), Donald, to chat about what life has looked like lately for our family. From three back-to-back road trips (yes, we’re still recovering!) to the kids starting in-person school for the first time, it’s been a season full of change, growth, and plenty of stories. We open up about: 🚗 The three road trips that (at times) tested our sanity, but al...
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Send us a text After a four-month break, we’re back and catching up on everything! In this episode, I sit down with my partner-in-crime (and life), Donald, to chat about what life has looked like lately for our family. From three back-to-back road trips (yes, we’re still recovering!) to the kids starting in-person school for the first time, it’s been a season full of change, growth, and plenty of stories. We open up about: 🚗 The three road trips that (at times) tested our sanity, but al...
The Eight Different Types of Advocacy with Director of Community Engagement of Global Genes, Daniel DeFabio
Confessions of a Rare Disease Mama
58 minutes
1 year ago
The Eight Different Types of Advocacy with Director of Community Engagement of Global Genes, Daniel DeFabio
Send us a textIn this episode I welcome back (for a repeat appearance!) Director of Community Engagement of Global Genes, Mr. Daniel DeFabio. During our conversation, we dive deep into the many facets of advocacy that we, as rare parents and caregivers deal with. Daniel shares his vast knowledge and experience in the rare disease community and together we break down the eight different types of advocacy that every rare disease parent/caregiver or patient can engage in.From policy advocacy to ...
Confessions of a Rare Disease Mama
Send us a text After a four-month break, we’re back and catching up on everything! In this episode, I sit down with my partner-in-crime (and life), Donald, to chat about what life has looked like lately for our family. From three back-to-back road trips (yes, we’re still recovering!) to the kids starting in-person school for the first time, it’s been a season full of change, growth, and plenty of stories. We open up about: 🚗 The three road trips that (at times) tested our sanity, but al...
