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Stanford Medicine

Chronic Disease, Technology

Survey shows patients with rare diseases and their caregivers are avid Internet users

Survey shows patients with rare diseases and their caregivers are avid Internet users

An earlier report by the Pew Internet & American Life Project found searching for health information is the third-most-popular activity on the web. Now new research from the nonprofit shows that when it comes to using the Internet to seek health information and support, one community outpaces all the rest: patients with rare diseases and their caregivers.

The findings are based on data from a national telephone survey of 3,001 adults and an online survey of 2,156 members of the National Organization for Rare Disorders. The survey results showed:

  • 18% of Internet users have gone online to find others with similar health concerns
  • 23% of Internet users with chronic health conditions look for peers online
  • 32% of Internet users with uncommon chronic health conditions look for peers online.
  • 26% of people caring for a loved one look for peers online.

The importance of these findings are underscored by respondents’ stories about how the web has been a crucial source of emotional support:

A mother of a small child with a rare condition wrote about the lifeline she has found online: “When a disease is so rare and there are no folks in your town, and few in your state who are going through what you are going through, you need a support group that encompasses people from all over the world. Getting to know people through the disorder has been an amazing experience and has created incredibly wonderful friendships and ties.”

Previously: Patients with rare diseases share their extraordinary stories and More TV dramas highlighting patients with rare diseases
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One Response to “ Survey shows patients with rare diseases and their caregivers are avid Internet users ”

  1. dean r Says:

    The rare condition of having a stroke also leads to massive internet searching. With no information provided by either your doctor or the stroke associations you are totally on your own. 6 million US survivors are wandering around lost.

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