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
Rebel Health: Rare Disease
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, […]
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: Was the work (whether paid or pro bono) useful, soul enriching, or on my mission path? Did it have a positive impact on the […]
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: […]
Public Q&A: Peer advice during a pandemic
A community colleague wrote: Our neighborhood list serve has all sorts of ‘advice’. I’ll spare you:) Are you able to assess how peer-to-peer exchange is playing out with all of this? In the spirit of Public Q&A, I invite readers to join me in responding: Yes. I’m seeing a ton of peer-to-peer exchanges of information, […]
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