This is a cross-post from my LinkedIn newsletter. Feel free to join the conversation there or post your thoughts in the comments below. Every single day, Emily Kramer-Golinkoff takes 30+ pills, plus insulin, and engages in hours of breathing treatments. She is a sought-after expert on patient-driven scientific discovery, having co-founded a nonprofit, Emily’s Entourage, that pursues breakthrough therapies for […]
key people
Wow! How? Public Access to Research
This is a cross-post from my LinkedIn newsletter. Feel free to join the conversation there or post your thoughts in the comments below. The U.S. National Library of Medicine’s PubMed indexes over 36 million biomedical research abstracts – a searchable trove of evidence that has been available to the public since 1996. It is both a national […]
Wow! How? Health
Wow! How? Health is a LinkedIn newsletter that will feature the Wow! stories of patients, survivors, and caregivers who are doing extraordinary things, along with the How? lessons that we all can learn. Subscribe to the newsletter or to my blog (I’ll cross-post here). Today’s story is about how connecting with a peer, a “just-in-time someone-like-you,” can make all the […]
Champions fast-track innovations
Champions help take a scrappy patient-led idea to scale. They give Seekers, Networkers, and Solvers access to resources held by mainstream institutions such as funding, media attention, regulatory guidance, or access to labs and manufacturing facilities. Champions fast-track innovations. This is the fourth post in a series that I’m writing to introduce the archetypes of […]
Solvers attack problems
Solvers identify challenges, then test and develop new concepts, code, and inventions to meet their needs. They work on a problem with a singular focus because their life – or the life of a loved one – often depends on their ability to find or invent a solution. Some Solvers openly share their designs online for […]
Networkers pool resources
“You are not alone.” People who are newly diagnosed or facing a health challenge long to hear those words. Connection is an antidote to suffering and confusion. When they are able to tap into peer-to-peer networks of patients and caregivers, Networkers learn in community about their condition, shrug off the burdens of isolation and shame, then urge […]
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