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 […]
Networkers
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 […]
The Black Panther Party’s Health Innovations
Here is the 40th in my series of “Wow! How? Health” stories, also shared on LinkedIn if you want to follow the conversation on that platform. In 1971, the Black Panther Party diagnosed the federal government’s failure to study sickle cell anemia, a genetic disease believed at the time to be found predominately in people […]
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? Visualizing Self Care
Continuing my series of stories that hopefully make you say, “Wow! How did they come up with that?” Sara Riggare has been living with early-onset Parkinson’s disease since she was a teenager. In my book, Rebel Health, I wrote about her as an example of a Seeker, Networker, and Solver. She is constantly on the hunt […]
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