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Susannah Fox

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Networkers

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

Wow! How? Peer Support

January 11, 2024 By Susannah Fox Leave a Comment

Wow! How? Health

Hank Azaria’s tribute to Matthew Perry was as much a love letter to peer support as it was a remembrance of his friend: “…as bad as we feel, as low as we go, we tend to feel we’re alone in it, whether our problem is alcoholism, a bad marriage, illness, depression, strife. We feel that […]

Filed Under: Networkers, peer-to-peer health care, policy issues Tagged With: AA, Esther Perel, Gabrielle Glaser, Rebel Health, SAHMSA

Wow! How? Gleevec

December 21, 2023 By Susannah Fox Leave a Comment

Wow! How? Health

When Norman Scherzer’s wife, Anita, was diagnosed with a rare form of cancer in 1994, he found that the most up-to-date information was being traded among patients who were connecting via email. When a new test, a new drug, and a new clinical trial were all developed at the same time, Scherzer helped organize the […]

Filed Under: Champions, Networkers, Solvers Tagged With: Anita Scherzer, Gleevec, Life Raft Group, Norman Scherzer, Rebel Health, Wow! How? Health

Wow! How? False Boundaries

November 17, 2023 By Susannah Fox 5 Comments

Wow! How? Health

This is a cross-post from my LinkedIn newsletter. Feel free to join the conversation there or post your thoughts in the comments below.  Every single day, Emily Kramer-Golinkoff takes 30+ pills, plus insulin, and engages in hours of breathing treatments. She is a sought-after expert on patient-driven scientific discovery, having co-founded a nonprofit, Emily’s Entourage, that pursues breakthrough therapies for […]

Filed Under: e-patient stories, key people, Networkers, Solvers Tagged With: cystic fibrosis, Emily Kramer-Golinkoff, Networkers, Rebel Health, Solvers, Wow! How? Health

Wow! How? Drug Interactions

November 3, 2023 By Susannah Fox Leave a Comment

Two sets of hands sort pills into a pillbox

This is a cross-post from my LinkedIn newsletter. Feel free to join the conversation there or post your thoughts in the comments below. People who connect with health peers are able to pool knowledge, track data, and disseminate what they learn. For some, it’s the difference between life and death. For example, Peggy, a woman […]

Filed Under: Networkers, patient networks, peer-to-peer health care, Seekers Tagged With: drugs, kidney disease, Marfan syndrome, medical errors, Networkers, Rebel Health, Seekers, Wow! How? Health

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Recent Comments

  • Lisa Suennen on Wow! How? Community: “That is a beautiful story. Kids always have the best answers” Aug 29, 11:31
  • Susannah Fox on Lessons learned about hospice care: “Zoe, thank you for the unvarnished comment! We need to go into end of life with our eyes open in…” Aug 5, 14:20
  • Zoe on Lessons learned about hospice care: “I despise home hospice and the entire industry can kiss my ass. I was duped into caring for my dying…” Aug 5, 03:45

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