Presenting our research to a roomful, not just a row full, of rare-disease patients and caregivers was an extraordinary experience.
Susannah Fox presented research on how people, particularly those living with rare disease, use online health resources and what the rest of us can learn from them.
Thirty percent of U.S. adults provide support to a loved one. The internet is a key information and communications resource for this front-line labor force.
Grassroots contribution to health research just got a boost. Is it time for us to measure personal genetic testing?
The American Journal of Managed Care recently published a commentary entitled, "Bowling Alone, Healing Together: The Role of Social Capital in Delivery Reform."
A 5-minute video overview of peer-to-peer health care.
Pew Internet asked two questions about "self-tracking" in 2010 - how should we expand this area of our research?
Susannah Fox will serve as a "white hat" advisor to participants in the Health Data Initiative Forum.
86% of smartphone owners used their phone in the past month to make real-time queries to help them meet friends, solve problems, or settle arguments
A conversation about rare disease, the impact of the internet, and love.