My phone started blowing up with texts from friends and family members yesterday morning, alerting me to a New York Times magazine cover story by Amanda Hess, “My Son Has a Rare Syndrome. So I Turned to the Internet” (gift link). Hess writes beautifully about her experience being dropped into the medical maze and her […]
peer-to-peer health care
Hack needed: Peer connection
This post is the latest in my series of “Wow! How? Health” stories, also shared on LinkedIn if you want to follow the conversation on that platform. It starts with a story that long-time readers of this blog will hopefully recognize! Ten years ago this week my friend Delina texted me: I am sweeping the kitchen and just found […]
Rare Disease in the U.S. 2025
Rare disease communities welcomed me as a researcher, inspired me to highlight their ingenuity in my book, Rebel Health, and now I am honored to share results from the first probability-based national survey to measure the rare disease population. I partnered with my former Pew Research colleague Kristen Purcell, now at SSRS, to write the […]
Rebel Health on The Nocturnists
Today is the one-year anniversary of the publication of my book, Rebel Health. To celebrate, I am inviting you to listen to my favorite conversation about why I wrote it and what lessons we can all draw from the patient-led revolution. Emily Silverman, MD, is the host of The Nocturnists. She suggested that I start […]
Wow! How? Dr. ChatGPT
Every post in my Wow! How? Health. series starts with a story that hopefully makes a reader say, “Wow! How did they accomplish this great health innovation?” The answer is often related to concepts I explore in my book, Rebel Health. Please let me know what you think or if you have questions. Comments are open. When […]
Wow! How? Social Support Matters
Most people, at the time of their diagnosis with a sleep disorder, do not know a single other person with the same condition. Yet peer support is an effective aid to this group, just as it has been shown to help people navigating pregnancy, living with diabetes, recovering from organ transplant, and managing many other […]
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