Damon Davis has a new podcast, Discovery Diaries, and I was honored be among his first guests. We got into a wide range of topics: the origins of my interest in patient-led innovation; artificial intelligence and how patients, survivors, and caregivers should be included in the design of AI tools; our time working together at […]
Seekers
The Other 80
Claudia Williams created The Other 80 podcast to talk about how medical care only accounts for 20% of health outcomes. The other 80% includes factors like food, housing, transportation options, social connection, etc. I was honored to be interviewed for episode #27, now available wherever you listen to podcasts. You can hear in my voice […]
Rebel Health Audiobook
I’m very happy to report that the audio version of my book, Rebel Health, is now available from Libro.fm, Chirp, and Audiobooks.com. It is narrated by Kim Niemi, whose voice has been described as “soothing, soulful, and powerful.” I love the samples the publisher chose (click on the links above to play them). Here’s the […]
Public Q&A: “I received scary test results. What questions should I ask my clinician?”
Sometimes the hardest part of a new situation, in any aspect of life but particularly our health, is saying out loud the scary thing. Someone dear to me received concerning test results and asked me to help craft a set of questions for their next appointment – the very first one since getting the results […]
Wow! How? Community Consults
“Lana,” a woman I interviewed who asked that her real name not be used, lives with mitochondrial disease and is an active member of a private Facebook group of people who share her diagnosis. Some of the members have become experts in drug interactions particular to “mito” and offer guidance to others based on their […]
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: […]
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