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Susannah Fox

I help people navigate health and technology.

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Emily Kramer-Golinkoff

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

Waiting with open arms

December 4, 2017 By Susannah Fox Leave a Comment

Wave Group Photo by Michael Cannon on Flickr

I’m honoring the contributions of my community colleagues over the years by pulling out some of their best comments and quotes. Emily Kramer-Golinkoff, in response to “A field guide to The Diagnosis Difference” (2013): My advice to a person or parent of a child newly diagnosed with Cystic Fibrosis would be: “I can only imagine […]

Filed Under: featured commenters, peer-to-peer health care Tagged With: cystic fibrosis, Emily Kramer-Golinkoff, Stanford Medicine X

How did you find your people?

April 17, 2017 By Susannah Fox 33 Comments

The internet gives us access not only to information, but also to each other. That deceptively simple insight, gained from years of research, contains so much of the hope I have for the future of health and health care. When we get sick or receive a new diagnosis, we often feel alone, but we shouldn’t. […]

Filed Under: peer-to-peer health care Tagged With: ACOR, ALS, cancer, cystic fibrosis, Danny Sands, E-Patient Dave, Emily Kramer-Golinkoff, patientslikeme, peer-to-peer healthcare, Smart Patients

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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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