On Nov. 1-2, 2017, Hope for Henry convened a diverse group of parents, kids, clinicians, designers, educators, and entrepreneurs to reimagine care for hospitalized kids. I’ll disclose that I am an advisor to Hope for Henry and helped organize the event, but I hope you’ll believe me when I say that it was, objectively, a […]
Rare Disease
“They come from the same community”
I often share links on Twitter, but without the context I’d love to give to each one. A few recent stories of the power of peer connection around health and well-being: Washington Post: Butterfly babies : A rare disease makes these young girls’ skin break and peel at the slightest touch, like a butterfly’s wings As […]
“His doctors were stumped. Then he took over.”
How might we empower people to participate in research about their own diseases or conditions? Which models work best for organizations solving medical mysteries or improving care for those living with rare conditions? These are two of the questions raised by a New York Times story today: “His doctors were stumped. Then he took over,” by Katie Thomas […]
Champions of Change
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 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.
Recent Comments