Today is Rare Disease Day, when we honor the millions of people who teach us what it’s like to live at the edges of the known world of medicine.
Rare Disease
What health care can learn from Mike Mulligan and his steam shovel
Google is upgrading health search…again. In 2010, I was inspired by Animal Farm to write that Google saw some health sites as more equal than others. This time I turned to Mike Mulligan and his Steam Shovel, by Virginia Lee Burton.
On celebrating “small wins” and lifting up women and girls
Two items stopped me in my tracks this week. Sharing them here on my outboard memory so I don’t forget (and hopefully they will inspire you, too).
Every-day magic
I’ve been following Bertrand Might’s story for a few years through his parents’ blog about his “movement disorder” (which turns out to be related to his incredibly rare condition, NGLY1 deficiency). Last week, Matthew Might co-authored a commentary with Matt Wilsey in the journal of the American College of Medical Genetics and Genomics: “The shifting model […]
“Pursue hope like it’s an outlaw.”
– Afternoon Napper during Rare Disease week in Washington, DC I love that line and that spirit — and this image captured by John Schinker because it looks like these zebras have formed a posse and are heading out on the trail together. When you hear hoofbeats, think “horses” but don’t rule out zebras.* And if you’re […]
Extremely rare, incredibly typical
After nearly 15 years tracking the cultural shifts happening at the intersection of health and the internet, I know a few things. #1 – don’t get between a parent and a piece of information he or she needs to make a decision about the health of a child. #2 – from 28.8 modems to the latest smartphones, […]
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