Jacqueline von Edelberg created a striking installation on the lawn of the U.S. Capitol on Monday, March 25. Each strip of cloth represents one child killed by a gun in the U.S. since the Sandy Hook massacre in 2012, 13,000 in all. The installation served as a backdrop for a rally commemorating the one year […]
Health Datapalooza X
This week is the 10th anniversary Health Datapalooza. It’s a milestone worth celebrating. In 2010, I attended what was then called the Community Health Data Forum at the Institute of Medicine. I posted a preview: Making Health Data Sing (Even If It’s a Familiar Song) and below are my notes from what we knew even […]
Public Q&A: How to connect teens with health peers
In the spirit of Public Q&A, I am sharing a question I received from someone who helps run outreach and support programs for a disease-focused nonprofit: “In your research did you learn about what mode and types of connecting teens preferred? Did any teens express wishes for something online that they couldn’t find in terms of connecting with peers?” Essentially, […]
Rare but not alone
Ashley Eakin, a filmmaker, is being brave and showing her real self online. She does it on behalf of the kids who share her rare condition so they can see themselves, in her image — a beautiful example of how the internet can be a bridge to hope and inclusion. Watch: When she mentions in […]
Building the evidence base for peer health advice
Imagine an intervention that produces results like these: One-third of those living with chronic conditions are now more likely to take necessary medications. The risk of admission to a neonatal ICU during first year of life reduced by 63%. People with with poorly-controlled diabetes were able to achieve a 1.1-point reduction in their HbA1c. Each […]
Rare Disease Day 2019
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 […]
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