• Skip to primary navigation
  • Skip to main content
  • Skip to footer

Susannah Fox

I help people navigate health and technology.

  • Home
  • Rebel Health
  • Blog
    • greatest hits
    • health data
    • peer-to-peer health care
    • public Q&A
  • About me
    • Bio
    • Now
    • Curriculum vitae
  • Events

Rare Disease

Mama birds: Catherine Fairchild and Laurie Strongin

March 16, 2012 By Susannah Fox 2 Comments

On February 29, 2012, Rare Disease Day, I hosted a conversation with Catherine Fairchild and Laurie Strongin, two people who have inspired me in my research about the social impact of the internet on health. They have also inspired me personally, finding joy and reasons to laugh when I think I’d just sit down and […]

Filed Under: e-patient stories, maternity Tagged With: Genetic Disorder, Hope for Henry, Marble Road, Mccune Albright Syndrome, Rare Disease

The impact of the internet on one man’s life

March 13, 2012 By Susannah Fox 9 Comments

Nell Minow is a movie critic and corporate governance watchdog (yep, both). She and I were seated together at a luncheon a few weeks ago, part of a weekend-long meeting on leadership. We had just watched the movie, Act of Valor, and began talking about different kinds of leaders and heroes — those who seek […]

Filed Under: e-patient stories, internet geology Tagged With: Americans With Disabilities Act, bulletin boards, Facial Paralysis, Hearing Loss, Indomitable Spirit, Moebius Syndrome, Navy Seals, Nell Minow, Rare Disease

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

Alpha Geeks in Health Care

July 6, 2011 By Susannah Fox 28 Comments

Here’s how tech guru Tim O’Reilly describes his work: So often, signs of the future are all around us, but it isn’t until much later that most of the world realizes their significance. Meanwhile, the innovators who are busy inventing that future live in a world of their own. They see and act on premises […]

Filed Under: patient networks, trends & principles Tagged With: Alpha Geek, Clinician, health care, Health Information Exchange, Innovators, librarians, Market Opportunities, Public Health, Public Health Workers, Rare Disease, rare diseases, Technology Gaps

  • « Go to Previous Page
  • Go to page 1
  • Interim pages omitted …
  • Go to page 5
  • Go to page 6
  • Go to page 7

Footer

Explore

Don't miss a post

Enter your email address and receive notifications of new posts by email.

Topics

  • Seekers
  • Networkers
  • Solvers
  • Champions
  • Health Data
  • Peer-to-Peer Health Care
  • Public Q&A

Recent Comments

  • 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
  • Susannah Fox on Lessons learned about hospice care: “Thank you for sharing!” Jul 30, 12:46

Copyright Susannah Fox © 2025 · WordPress · Log in