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Susannah Fox

I help people navigate health and technology.

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patient groups

When Patients Band Together: Far From a Disgrace

September 8, 2011 By Susannah Fox 23 Comments

When it comes to news sites, I love scanning readers’ comments as much as the original articles. Comments are an unfiltered feed, a window into public opinion (in other words, catnip for someone like me). One thread caught my eye recently. Ron Winslow wrote a very nice piece in the Wall Street Journal about how […]

Filed Under: patient networks, pt/doc co-care Tagged With: Advocates, Cardiologist, Mainstream Media, Mayo Clinic, patient groups, Patient Network, Peer To Peer, Rare Disease, rare diseases, Roadblocks, Ron Winslow, Scad, Universal Health Care, Using Social Networks, Virtual Registry, Wall Street Journal

Online Patient Groups

June 13, 2007 By Susannah Fox 10 Comments

Laura Landro’s column in the Wall Street Journal features a series of profiles of online patient groups like MPDinfo.org and ACOR.org, among others. Now seems like the right time to post some data that I’ve been holding back, waiting for the right opportunity to talk about it publicly.

Filed Under: patient networks Tagged With: ACOR, health, Landro, mpdinfo, patient groups, survey

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popular posts

  • Hack needed: Tiny pills, trembling hands
  • Sunflowers turn to each other for help
  • Hypothesis generator
  • Mystery solved. Again.

Recent Comments

  • Dave deBronkart on Hack needed: Tiny pills, trembling hands: “A later article on Choi’s project: https://www.cbc.ca/radio/asithappens/as-it-happens-the-monday-edition-1.5868846/how-tiktok-users-designed-a-better-pill-bottle-for-people-with-parkinson-s-1.5868848” Jan 17, 19:04
  • Susannah Fox on Hack needed: Tiny pills, trembling hands: “Update: Peer-to-peer connections, open-source design, and new manufacturing capabilities may have yielded a solution. Here’s the story: TikTok Users Rally…” Jan 11, 06:39
  • Susannah Fox on Lessons learned about hospice care: “Erica, thank you for fighting for your grandmother and I’m sorry for your loss. So many themes and vignettes in…” Jan 4, 08:25

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