{"id":96113,"date":"2009-02-11T00:00:00","date_gmt":"2009-02-11T05:00:00","guid":{"rendered":"https:\/\/alpha.pewresearch.org\/pewresearch-org\/2009\/02\/11\/rare-diseases-and-online-resources\/"},"modified":"2024-04-14T04:17:51","modified_gmt":"2024-04-14T09:17:51","slug":"rare-diseases-and-online-resources","status":"publish","type":"post","link":"https:\/\/alpha.pewresearch.org\/pewresearch-org\/internet\/2009\/02\/11\/rare-diseases-and-online-resources\/","title":{"rendered":"Rare Diseases and Online Resources"},"content":{"rendered":"

One in ten Americans is living with a rare disorder. The internet can be a vital source of information for people who may never have otherwise met someone else with their disease or condition. This is the crux of a discussion happening on e-patients.net<\/a> and on washingtonpost.com<\/a>. <\/p>\n\n

One of the challenges is making sure everyone who needs to find these resources is able to. The Pew Internet Project’s Generations Online<\/a> report shows how social media use tapers off among older adults and brings to mind an image of the internet as a pool of varying depths. <\/p>\n\n

Email and search are the shallow waters of the internet pool. Everyone starts there, some people don’t go further. Social networking sites are in the deep end. I think some people dive in because they’re naturals, others venture because they are compelled by circumstance such as a rare disease.<\/p>","protected":false},"excerpt":{"rendered":"

One in ten Americans is living with a rare disorder. 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