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 […]
Brain Tumor
Put your tumor to a better use by making it into a bottle opener
Image above: Megan Smith, Obama White House Chief Technology Officer; Steven Keating, holding replicas of his brain tumor; and John P. Holdren, Director of the Obama White House Office of Science and Technology Policy; on the day the Precision Medicine Initiative was announced. I’m honoring the contributions of my community colleagues over the years by […]
Case study: Brain surgery
We have a “last mile” problem in patient communities. In the first post of this series, I asked for general advice about finding your people — the peers who could give you advice about your health condition and answer even your most secret questions. Now I’d like to focus on how someone would approach getting […]
Patient Power: Andrew Schorr–Susannah Fox
Andrew Schorr‘s recent comment also merits a separate post: I am a 12-year leukemia survivor and very grateful to the ACOR community members who helped me numerous times along the way. I have dedicated my life to creating community online and also, in a supplementary way, on radio. But my concept of community is a […]
Recent Comments