---
title: "What People Living With Rare Disease Can Teach Us"
description: "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."
date: "2012-07-14"
authors:
  - name: "Susannah Fox"
    job_title: "Former Researcher"
    link: "https://www.pewresearch.org/staff/susannah-fox/"
url: "https://www.pewresearch.org/internet/2012/07/14/what-people-living-with-rare-disease-can-teach-us/"
categories:
  - "Health Care"
  - "Health Policy"
  - "Medicine & Health"
  - "Platforms & Services"
  - "Social Media"
---

# What People Living With Rare Disease Can Teach Us

Susannah Fox spoke at the [2012 Moebius Syndrome Conference ](http://www.moebiussyndrome.com/go/events/10th-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 ](http://e-patients.net/archives/2012/07/health-care-hackers.html)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.

http://www.slideshare.net/PewInternet/what-people-living-with-rare-disease-can-teach-us