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Susannah Fox

I help people navigate health and technology.

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David Fajgenbaum

What if your clinician gave you a prescription to check out a patient group that they knew to be good?

February 12, 2020 By Susannah Fox 44 Comments

Post-it notes fill one section of a diagram

Amy Gleason (@ThePatientsSide) captured this line of mine, delivered on a panel at the Health Datapalooza yesterday. Her tweet generated an interesting cascade of reactions ranging from: “This is potentially dangerous” to “This is obvious (and old news).” I thought I’d expand on my observations and see if people want to expand on theirs in […]

Filed Under: patient networks, peer-to-peer health care, public Q&A Tagged With: ACOR, Bon Ku, Danny Sands, David Fajgenbaum, E-Patient Dave, Health Datapalooza, peer-to-peer healthcare

Chasing cures

September 10, 2019 By Susannah Fox 7 Comments

CHASING MY CURE book cover

Years ago, I met a mom of a child with a rare disease who matter-of-factly shared her story, which included as many twists and close calls as any blockbuster summer movie. I marveled at her heroism and she said no, she rejects that description. “I’m not a hero,” she insisted. “I’m a typical mom. You […]

Filed Under: e-patient stories, key people, positive patterns Tagged With: Abby Norman, Afternoon Napper, Bon Ku, Dana Lewis, David Fajgenbaum, Doug Lindsay, Rare Disease, rare diseases, Sharon Terry, Terry Jo Bichell

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popular posts

  • Crazy, crazy, LongCovid, obvious
  • Sunflowers turn to each other for help
  • Hack needed: Tiny pills, trembling hands
  • Case study: One in a million diagnosis

Recent Comments

  • Susannah Fox on Crazy, crazy, LongCovid, obvious: “Maneesh, thank you! I want to highlight one of the great points you make: Someone should be documenting the real-time…” Jan 26, 10:57
  • Susannah Fox on Crazy, crazy, LongCovid, obvious: “Thank you, Carolyn! My hope is that because clinician leaders like NIH Director Francis Collins are praising the patient-led researchers’…” Jan 26, 10:23
  • Susannah Fox on Crazy, crazy, LongCovid, obvious: ““I can tell you the names of all the women who reached out to respond.” That resonates. My own experience…” Jan 25, 13:11

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