Yoko Sen is a musician who, when spending time in a hospital as a patient in 2012, noticed that her cardiac monitor and another patient’s fall-risk alarm created a spooky chord known as the devil’s interval. Composers use it sparingly because it sounds so foreboding. Even in a weakened state, Sen began asking questions about […]
Champions
Wow! How? Moebius Syndrome
There are seven universal facial expressions, understood across all cultures: happiness, surprise, contempt, sadness, anger, disgust, fear. Someone’s ability to recognize – and use – those expressions helps them navigate in the world. Historically, people with expressive faces – a big grin, for example – were perceived as happier than those who did not smile […]
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 […]
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? End of life
What if I told you that a key health care metric grew in a positive direction, from 24% to 31% in 15 years? What if I then told you that a big part of the change was driven by people inspired by personal experiences, not clinical training? Most Americans tell survey researchers they don’t want […]
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