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 […]
Wow! How? Peer Support
Hank Azaria’s tribute to Matthew Perry was as much a love letter to peer support as it was a remembrance of his friend: “…as bad as we feel, as low as we go, we tend to feel we’re alone in it, whether our problem is alcoholism, a bad marriage, illness, depression, strife. We feel that […]
Books I read while writing Rebel Health
While writing my book, Rebel Health, I dove into the history of innovation and of the patient-led scientific revolution. I read the daring adventures of caregivers, survivors, and patients who pushed the edges of what is possible in medicine. I learned about clinicians’ and researchers’ perspectives on the changes happening in health care. And I […]
Wow! How? Gleevec
When Norman Scherzer’s wife, Anita, was diagnosed with a rare form of cancer in 1994, he found that the most up-to-date information was being traded among patients who were connecting via email. When a new test, a new drug, and a new clinical trial were all developed at the same time, Scherzer helped organize the […]
Wow! How? Ring Theory
The swirl of holiday parties, family gatherings, and gift shopping expeditions (online and offline) have me feeling overwhelmed. And I know I’m not alone. Thanks to the 2023 ARCHANGELS Caregivers & Holidays Survey we have data on a key group of people: Take a moment to think about who in your life is going through […]
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