This post is part of my LinkedIn series: Wow! How? Health. I welcome comments on either platform. Thirty-three years ago today, on September 5, 1991, activists unfurled a giant, inflatable condom over a U.S. Senator’s house. Don’t believe me? Watch a 30-second news clip or a 5-minute documentary about the action. It was a splashy way […]
Long Covid
Wow! How? Patient Memoirs
In his book, The Long Haul, Ryan Prior writes about his advocacy on behalf of people with ME/CFS: Though I had negotiated a fragile truce with the disease, my deeper fear was that it would eventually fully disable me, just as it had done for so many of my friends…At the edge of my every thought […]
Public Q&A: My 5 favorite books on how to defend yourself against the U.S. health care system
Shepherd.com invites authors to write heartfelt reviews of other people’s books on a topic related to their own work. The site is a rabbit hole that you will LOVE exploring, so go ahead and click on, for example, “The best books about America’s toughest time: life in the dirty thirties” or “The best children’s books […]
Covid and the Future of Health
You are cordially invited to a book talk & reception on Wednesday, May 29, at 7pm at the Tabard Inn in Washington, DC. Ryan Prior, author of The Long Haul, and I will discuss how innovative patients are changing medicine for the better and where we see this grassroots movement heading next. If you haven’t […]
Public Q&A: Rare Disease and Rebel Health
The Global Genes RARE Advocacy Summit in September 2023 provided a forum for me to talk, for the first time, about my upcoming book and how rare disease communities have been a key part of my professional life. Here’s a set of questions that Sravanthi Meka of Global Genes asked me in advance of the meeting: […]
Wow! How? Patient-Led Research
A scientific journal article written primarily by patients about their health condition has been downloaded over a million times. We reached this milestone after years of activism, advocacy, and demands for justice. The internet supercharged everyone’s ability to connect with information and with each other. The crucible of the pandemic then forced us into new […]
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