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Susannah Fox

I help people navigate health and technology.

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Ryan Prior

Wow! How? Patient Memoirs

August 29, 2024 By Susannah Fox 2 Comments

Four books: The Long Haul; Chasing My Cure; AfterShock; Wide Awake and Dreaming

In his book, The Long Haul, Ryan Prior writes about his advocacy on behalf of people with ME/CFS: Though I had negotiated a fragile truce with the disease, my deeper fear was that it would eventually fully disable me, just as it had done for so many of my friends…At the edge of my every thought […]

Filed Under: Champions, key people, Networkers, peer-to-peer health care, Seekers, Solvers Tagged With: cancer, David Fajgenbaum, Jessie Gruman, Julie Flygare, Long Covid, Lucy Grealy, ME/CFS, narcolepsy, rare diseases, Ryan Prior, Wow! How? Health

Covid and the Future of Health

May 10, 2024 By Susannah Fox Leave a Comment

Front entrance of Hotel Tabard Inn

You are cordially invited to a book talk & reception on Wednesday, May 29, at 7pm at the Tabard Inn in Washington, DC. Ryan Prior, author of The Long Haul, and I will discuss how innovative patients are changing medicine for the better and where we see this grassroots movement heading next. If you haven’t […]

Filed Under: key people, Networkers, Solvers Tagged With: Long Covid, Rebel Health, Ryan Prior, The Long Haul

Books I read while writing Rebel Health

January 2, 2024 By Susannah Fox 2 Comments

Books stacked on a shelf

While writing my book, Rebel Health, I dove into the history of innovation and of the patient-led scientific revolution. I read the daring adventures of caregivers, survivors, and patients who pushed the edges of what is possible in medicine. I learned about clinicians’ and researchers’ perspectives on the changes happening in health care. And I […]

Filed Under: key people, research issues Tagged With: Abby Norman, Alondra Nelson, Amy Marcus, Chris Schroeder, Dana Lewis, Danny Sands, David Fajgenbaum, Diana Forsythe, E-Patient Dave, Elaine Schattner, Eric Topol, Eric von Hippel, Fiona Lowenstein, Howard Rheingold, James Fowler, Laurie Strongin, Meghan O'Rourke, MIT Press, Nicholas Christakis, Paul Batalden, Rebel Health, Ross Douthat, Ryan Prior, Sara Riggare, Siren Interactive, Sorrel King, Tom Ferguson, Victor Montori

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Recent Comments

  • Susannah Fox on Public Q&A: “I received scary test results. What questions should I ask my clinician?”: “Thanks, Samantha! I love your signature line/bona fides list — you tick the boxes for “learned and loved experience” described…” May 6, 15:33
  • Samantha Bridge on Public Q&A: “I received scary test results. What questions should I ask my clinician?”: “Great conversation. It has been my experience as a nurse to have the conversation before the testing. What is the…” May 4, 09:05
  • 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

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