Longtime followers of this blog know I believe in the power of peers, particularly among people living with rare conditions, and may also know that I am a food-allergy mom. This past weekend I had the chance to attend the annual conference for my rare community, FAREcon, and drink from the peer advice well. Warning: This […]
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 […]
I’m honoring the contributions of my community colleagues over the years by pulling out some of their best comments and quotes. Jack Penner, in response to “His doctors were stumped. Then he took over” (2017): In terms of how can we empower patient to become active participants, one thing that comes to mind is lowering […]
We have a “last mile” problem in patient communities. In the first post of this series, I asked for general advice about finding your people — the peers who could give you advice about your health condition and answer even your most secret questions. Now I’d like to focus on how someone would approach getting […]
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 […]
May 10-16, 2015, is Food Allergy Awareness Week. I am grateful to the women (and a few men) who help me care for my son with food allergies. I’ve never met most of them in person, but they are there for me, 24×7, answering questions and sharing resources.