Shepherd.com invites authors to write heartfelt reviews of other people’s books on a topic related to their own work. The site is a rabbit hole that you will LOVE exploring, so go ahead and click on, for example, “The best books about America’s toughest time: life in the dirty thirties” or “The best children’s books […]
public Q&A
Public Q&A: “I received scary test results. What questions should I ask my clinician?”
Sometimes the hardest part of a new situation, in any aspect of life but particularly our health, is saying out loud the scary thing. Someone dear to me received concerning test results and asked me to help craft a set of questions for their next appointment – the very first one since getting the results […]
Public Q&A: Rare Disease and Rebel Health
The Global Genes RARE Advocacy Summit in September 2023 provided a forum for me to talk, for the first time, about my upcoming book and how rare disease communities have been a key part of my professional life. Here’s a set of questions that Sravanthi Meka of Global Genes asked me in advance of the meeting: […]
Public Q&A: Human-centered design
A community colleague recently tweeted an intriguing question: “Looking for a rec! Our grant team would like to have more knowledge & training around #HumanCenteredDesign for research & community engagement. Does anyone have #HCD trainings, modules, or programs they love?” She tagged a few people, including me, and a public conversation ensued. People shared resources, […]
Public Q&A: Impact review
I conduct an impact review at the end of each year, looking back at how I spent my time. In 2018, I published a shareholder letter listing the questions I ask: I’d like to hear from other people who take stock around this time each year. What questions do you ask yourself? What measures do […]
Public Q&A: COVID19 precautions and care
As a trusted node on my friends’ “nerd network” (i.e., the people who are known to dig in and research everything so others may not have to) I have been asked a few questions that I’d like to share, in the hopes that other people can add their own perspectives — and new questions! Question: […]
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