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Susannah Fox

I help people navigate health and technology.

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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

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