– Zoe Brain, in a comment on the New York Times magazine story, The Hazards of Growing Up Painlessly, which garnered an extraordinary display of public ignorance and fellowship around rare conditions. My hope is that the reporter and editors read every comment and learned from the community peer review of the article.
Rare Disease
“Sometimes there isn’t an obvious silver lining to cling to, so you have to try and create your own.”
– Kristen Cerabona, mother of a girl living with CLOVES Syndrome, writing about what it’s like to be a “marathon parent.”
Mama birds: Catherine Fairchild and Laurie Strongin
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 […]
The impact of the internet on one man’s life
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 […]
When Patients Band Together: Far From a Disgrace
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 […]
Alpha Geeks in Health Care
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 […]
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