For years I tried to find ways to explain the particular challenges facing people with undiagnosed and rare health conditions. I decided to create a visualization showing the wide spectrum of people’s health needs and I’d like some feedback on it. Imagine a horizontal line. At the far left side are the people whose needs […]
ALS
Peer health playbooks
I’m collecting examples of peer health playbooks: the how-to guides that patients and caregivers write so that people following their path won’t stumble into the same pitfalls. If you know of one that is not listed below, please tell me about it in the comments. I AM ALS put together a step-by-step playbook of how […]
A Matter of Trust, Perception, Risk, and Uncertainty
The Big Issues Raised by the Acquisition of PatientsLikeMe and Other Patient Data Transactions By Susannah Fox, Jane Sarasohn-Kahn and Lisa Suennen I’ve lived long enough to have learned The closer you get to the fire the more you get burned But that won’t happen to us Cause it’s always been a matter of trust -A […]
How did you find your people?
The internet gives us access not only to information, but also to each other. That deceptively simple insight, gained from years of research, contains so much of the hope I have for the future of health and health care. When we get sick or receive a new diagnosis, we often feel alone, but we shouldn’t. […]
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