People living with rare conditions inspire my work every day. A few resources to check out: Follow @RareDiseaseDay on Twitter or subscribe to my Rare Disease list Read Wendy White’s post on e-patients.net: Rare Disease Day 2013: Help Spread Awareness Read the Pew Research Center’s report featuring insights from people living with rare conditions: Peer-to-peer […]
Rare Disease
The boy with a thorn in his joints (and the mom who turned over every rock)
When I was writing the Pew Research report, “Peer-to-peer Healthcare,” I switched back and forth between numbers and stories, national survey data and notes from my fieldwork among people living with rare conditions. I learned to scan my spreadsheet of rare-disease respondents for women’s names since they seemed to stop at nothing to protect their […]
Look for the helpers
You may have seen the image before, associated with this quote: “When I was a boy and I would see scary things in the news, my mother would say to me, ‘Look for the helpers. You will always find people who are helping.’ To this day, especially in times of ‘disaster,’ I remember my mother’s […]
“So many quiet heroes and heroines who live among us…”
– Zoe Brain, in a comment on the New York Times magazine story, The Hazards of Growing Up Painlessly, which garnered an extraordinary display of public ignorance and fellowship around rare conditions. My hope is that the reporter and editors read every comment and learned from the community peer review of the article.
“Sometimes there isn’t an obvious silver lining to cling to, so you have to try and create your own.”
– Kristen Cerabona, mother of a girl living with CLOVES Syndrome, writing about what it’s like to be a “marathon parent.”
Mama birds: Catherine Fairchild and Laurie Strongin
On February 29, 2012, Rare Disease Day, I hosted a conversation with Catherine Fairchild and Laurie Strongin, two people who have inspired me in my research about the social impact of the internet on health. They have also inspired me personally, finding joy and reasons to laugh when I think I’d just sit down and […]
Recent Comments