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Susannah Fox

I help people navigate health and technology.

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Long Covid

Public Q&A: Rare Disease and Rebel Health

January 19, 2024 By Susannah Fox Leave a Comment

Rebel Health: A field guide to the patient-led revolution in medical care

The Global Genes RARE Advocacy Summit in September 2023 provided a forum for me to talk, for the first time, about my upcoming book and how rare disease communities have been a key part of my professional life. Here’s a set of questions that Sravanthi Meka of Global Genes asked me in advance of the meeting: […]

Filed Under: Champions, health data, Networkers, peer-to-peer health care, public Q&A, Seekers, Solvers Tagged With: Global Genes, Hhs, Long Covid, MIT Press, Rare Disease, Rebel Health

Wow! How? Patient-Led Research

January 18, 2024 By Susannah Fox Leave a Comment

Wow! How? Health

A scientific journal article written primarily by patients about their health condition has been downloaded over a million times. We reached this milestone after years of activism, advocacy, and demands for justice. The internet supercharged everyone’s ability to connect with information and with each other. The crucible of the pandemic then forced us into new […]

Filed Under: Champions, Networkers, patient networks, positive patterns, Seekers, Solvers Tagged With: Council of Medical Specialty Societies, Eric Topol, Fiona Lowenstein, Hannah Davis, Julia Moore Vogel, Lisa McCorkell, Long Covid, Patient-Led Research Collaborative, Rebel Health, Wow! How? Health

The Next Big Thing in Health

December 15, 2022 By Susannah Fox 3 Comments

AHIP: The Next Big Thing in Health podcast logo

This week I was a guest on the Next Big Thing in Health podcast (listen here or wherever you get your podcasts). I thought I’d share links to some of the people and resources I mention: ARCHANGELS WORK helps people translate the skills and experiences they acquired as caregivers into talking points for a job […]

Filed Under: peer-to-peer health care Tagged With: AA, ACT-UP, ARCHANGELS, Atlas of Care, caregivers, Long Covid, National Breast Cancer Coalition, Patient-Led Research Collaborative, podcast

Too legit to quit

April 18, 2022 By Susannah Fox 17 Comments

Sunflowers with a bee

Sara Riggare, PhD, an expert in patient-led research and personal science, tweeted this animated GIF depicting the common process in starting personal science, which is based on Anne Wright’s work: Andrea Downing was among those who replied, writing: “My feedback: We’ve been saying for years what you outline here. The question is: how do we […]

Filed Under: health data, key people, peer-to-peer health care, research issues Tagged With: Andrea Downing, Anne Wright, Dana Lewis, Gary Wolf, Long Covid, personal science, Quantified Self, Sara Riggare, Unrest

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Recent Comments

  • Susannah Fox on Rare Disease in the NYT: “Captivated is such a good description of how I felt, too. I read the essay once through quickly, then a…” Apr 25, 11:12
  • Anonymousity on Rare Disease in the NYT: “I was captivated by Amanda Hess’s story. I too dove right in in reading all the way through the article…” Apr 25, 09:24
  • Susannah Fox on Rare Disease in the NYT: “Thank you, Dave! Yes, I’ve been a fan of Hess’s writing for a long time and now, well, I’m a…” Apr 23, 22:00

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