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Episode 3: Susannah Fox | Mapping the People Who Move Systems
Episode 3: Susannah Fox | Mapping the People Who Move Systems
Susannah Fox brings a unique ability to listen deeply and reflect patterns back to the people living them. In this conversation, she shares how that way of listening has shaped her work as a researcher and author, and why it matters so much in spaces where systems are fragmented and people are often left to navigate on their own.
The episode centers on Susannah’s book Rebel Health, which outlines the roles needed in a patient-led revolution and offers a framework for understanding how change actually happens. Together, we explore how those roles show up across rare disease communities, where seekers, solvers, networkers, and champions often emerge out of necessity rather than intention.
We spend significant time discussing Champions in particular, especially those who may not have a direct personal connection to rare disease. Susannah shares insights into how these individuals can play a meaningful role when they listen well, show up consistently, and align themselves with the needs of the community rather than their own assumptions.
This conversation widens the lens of the Rare Rebels™ map, showing how movements grow through connection, curiosity, and people willing to stand alongside others, even when the challenges are not their own.
Guest:
Susannah Fox — Researcher, author, and patient-experience champion whose work has illuminated how communities lead innovation through shared knowledge, connection, and self-organized care.
About Rare Rebels™
Rare Rebels™ is an ongoing effort to map the rare disease ecosystem through the people leading the charge, documenting how change happens and how connections across science, advocacy, and lived experience shape what becomes possible.
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By Melody Joy Paine
5
8686 ratings
Episode 3: Susannah Fox | Mapping the People Who Move Systems
Susannah Fox brings a unique ability to listen deeply and reflect patterns back to the people living them. In this conversation, she shares how that way of listening has shaped her work as a researcher and author, and why it matters so much in spaces where systems are fragmented and people are often left to navigate on their own.
The episode centers on Susannah’s book Rebel Health, which outlines the roles needed in a patient-led revolution and offers a framework for understanding how change actually happens. Together, we explore how those roles show up across rare disease communities, where seekers, solvers, networkers, and champions often emerge out of necessity rather than intention.
We spend significant time discussing Champions in particular, especially those who may not have a direct personal connection to rare disease. Susannah shares insights into how these individuals can play a meaningful role when they listen well, show up consistently, and align themselves with the needs of the community rather than their own assumptions.
This conversation widens the lens of the Rare Rebels™ map, showing how movements grow through connection, curiosity, and people willing to stand alongside others, even when the challenges are not their own.
Guest:
Susannah Fox — Researcher, author, and patient-experience champion whose work has illuminated how communities lead innovation through shared knowledge, connection, and self-organized care.
About Rare Rebels™
Rare Rebels™ is an ongoing effort to map the rare disease ecosystem through the people leading the charge, documenting how change happens and how connections across science, advocacy, and lived experience shape what becomes possible.