Confessions of a Rare Disease Mama

The Eight Different Types of Advocacy with Director of Community Engagement of Global Genes, Daniel DeFabio


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In 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 school support, Daniel explains how each form of advocacy plays a vital role in making an impact, whether you’re new to advocacy or a seasoned advocate looking to expand your influence. We explore how these various types empower families, patients, and communities to drive change at both a personal and systemic level.

Tune in to gain valuable insights on how you can take actionable steps in your advocacy journey, no matter where you are in your path, and learn more about the incredible work of Global Genes in uniting the global rare disease community.

Daniel's 8 Stages of Advocacy Article
Learn more about Daniel DeFabio

Register for Global Genes Patient Advocacy Summit
Learn how to tell your story
Beginners guide to rare disease

Resources & Links for this episode:

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Confessions of a Rare Disease MamaBy Jillian Arnold

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