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 […]
food allergy
Why I (finally) signed up for health data access
Christine Bechtel, Lygeia Ricciardi, Dave deBronkart, Casey Quinlan, and Donna Cryer published an article in Health Affairs this week: “Why Aren’t More Patients Electronically Accessing Their Medical Records (Yet)?” Please click through and read it — it’s open access. Being a health geek, I read footnotes and every link in this article is worth your time. Bechtel […]
Public Q&A: conference organizing
A friend asked me to share some of my tips about how to organize a useful, comfortable, inclusive health care conference. Meeting planning is not what I do for a living, but since I attend about a dozen events each year, I’ve captured quite a few observations about how to create a great experience for […]
Update: A Seat at the Table
Last November I attended FAREcon, an annual event devoted to food allergy research and education. I published my notes in a long, deep-dive post that included one short section on pending litigation (below). I’m thrilled to report a positive update: “A federal appeals court Friday ruled against the tavern that refused to let the child […]
A deep dive into food allergy research and education
Longtime followers of this blog know I believe in the power of peers, particularly among people living with rare conditions, and may also know that I am a food-allergy mom. This past weekend I had the chance to attend the annual conference for my rare community, FAREcon, and drink from the peer advice well. Warning: This […]
Back to school with food allergies
Food-allergy parents all over the U.S. are engaging in our particular back-to-school rituals: gathering signatures on forms, packaging up emergency medications (one for the nurse, one for the classroom, one for the backpack…), and stocking up on lunchbox essentials. But what about the teachers? How are they preparing? I’d never considered it until my niece […]
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