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Susannah Fox

I help people navigate health and technology.

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Archives for April 2025

Rare Disease in the NYT

April 23, 2025 By Susannah Fox 5 Comments

Ultrasound of a baby

My phone started blowing up with texts from friends and family members yesterday morning, alerting me to a New York Times magazine cover story by Amanda Hess, “My Son Has a Rare Syndrome. So I Turned to the Internet” (gift link). Hess writes beautifully about her experience being dropped into the medical maze and her […]

Filed Under: Networkers, peer-to-peer health care, Seekers Tagged With: Amanda Hess, New York Times, Rare Disease

Hack needed: Peer connection

April 18, 2025 By Susannah Fox Leave a Comment

Close up picture of a dandelion

This post is the latest in my series of “Wow! How? Health” stories, also shared on LinkedIn if you want to follow the conversation on that platform. It starts with a story that long-time readers of this blog will hopefully recognize! Ten years ago this week my friend Delina texted me: I am sweeping the kitchen and just found […]

Filed Under: Champions, Networkers, peer-to-peer health care, Seekers, Solvers Tagged With: Allie Signorelli, Delina Pryce McPhaull, Instagram, Katie Couric, Parkinson's, Rebel Health, Wow! How? Health

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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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