Nine Precision Medicine “Champions of Change” were honored at a White House event on Wednesday, July 8. I count everyone in that picture as a community colleague — and some as dear friends. My role at the event was to moderate a discussion with four of the Champions: Amy Gleason, Anish Sebastian, Hugo Campos, and Howard Look. […]
Rare Disease
Rare Disease Day
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.
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 […]
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