When we get sick or face a new challenge in our lives, we often feel alone, but we shouldn’t. There are people who have been in the same situation and are eager to help if they only knew how to find us. That’s one of my core beliefs, based on the fieldwork and research I’ve […]
Rare Disease
The Rise of the New Bio-citizen
Over the next two days, I’ll be part of a group convened by Eleonore Pauwels and Todd Kuiken to discuss barriers to citizen-driven biomedical research. If you are intrigued, read the report, “The Rise of the New Bio-citizen,” which lays out how people “are pursuing a range of activities from analyses of genomic data for […]
Unrest
The film “Unrest” will debut on Independent Lens this week (check your local listings — in the DC area it will air on Jan. 12 at 10:30pm on WETA). I couldn’t wait and bought my own digital copy on Amazon. Let me just say: It’s no surprise that it’s on the short list for an Academy […]
Re-imagining care for hospitalized kids
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 […]
“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 […]
Recent Comments