July 14, 2012

What People Living With Rare Disease Can Teach Us

Susannah Fox spoke at the 2012 Moebius Syndrome Conference in Philadelphia, PA, presenting the Pew Internet Project’s research on how people, particularly those living with rare disease, use online health resources.

Her remarks included insights gathered in both a national telephone survey of U.S. adults and an online survey of members of the National Organization for Rare Disorders.

Pew Internet’s research shows that the internet gives patients and caregivers access not only to information, but also to each other. Health professionals remain the central source of information for most Americans, but “peer-to-peer healthcare” is a significant supplement, particularly for those in the crucible of rare disease.