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. When Michael Katz was diagnosed with multiple myeloma, he was fortunate to connect with someone who had recently completed treatment, the “just-in-time someone-like-me” that could guide him. He vowed to do the […]
Rebel Health
Jean Nidetch, Rebel Health leader
Jean Nidetch and six friends decided to try to lose weight together, meeting at her home to encourage and support each other in their quest. Their success drew more friends and in May, 1963, Nidetch launched a company based on the idea that peer support is key to weight control. Over 400 people showed up […]
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 […]
Wow! How? Patient-Led Research Scorecards
Most stakeholders in biomedical innovation – scientists, clinicians, patients, caregivers, funders, regulators – recognize each other as allies in the fight against disease. But they often lack shared principles and practices to guide the work they do together. For example, a research organization may say they value patient input, but they do not recognize their […]
Wow! How? “Breaking Brad”
The latest in my series of stories that hopefully make you say, “Wow! How did they come up with that?” Bradley Burnam loved his job as a medical device sales rep because, as he puts it, he got to play doctor: wear scrubs, visit hospitals, and work with patients. But during one site visit he […]
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 […]
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