Today is Rare Disease Day, when we lift up the stories of the 300 million people who live with more than 6,000 rare conditions. This year’s theme focuses on bridging health and social care, alleviating the heavy burden on people who coordinate medical, social, and support services for themselves and their loved ones. The National […]
peer-to-peer health care
Public Q&A: Empowering people in their relationships with clinicians
In the spirit of public Q&A, I’m sharing an intriguing question I received recently from a community colleague. Check out my answer and then add your ideas and suggestions in the comments below. Do you know of any particularly good or interesting services to empower patients in their relationships with doctors, especially ones which involve […]
Well/Connected
Dr. Joe Kvedar interviewed me for his podcast, Well/Connected, and I thought I’d share footnotes for all the resources I mentioned. Key findings from the national survey of 14- to 22-year-olds focused on digital health and social media use, sponsored by Hopelab and Well Being Trust, which took a special look at people living with […]
Peer support for when the system fails
What do you do when you know something is wrong but you can’t find anyone to confirm your suspicions? Or when you finally identify the culprit but find out that other people are being kept in the dark? These days it’s likely that you go online and if you are lucky — or determined — […]
Social media as a platform for hope
I’ve been thinking about how people react to a crisis. How, if we are lucky, we find ways to lend and borrow expertise to get through it. And how we lend and borrow courage. In the American South, there is something called the Cajun Navy, an ad hoc, informal group of people who use their […]
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 […]
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