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1293 points rmason | 1 comments | 06 Mar 19 20:30 UTC | HN request time: 0.407s | source

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ebertx ◴[06 Mar 19 22:09 UTC] No.19323398[source]▶

>>19322448 (OP) #

I disabled my Facebook account 4 years or so ago and didn't miss it. That said, I now have a daughter with an extremely rare genetic disorder. Although there are a number of databases out there specifically to help parents find other families with rare genetic disorders, we didn't find anyone until we resorted to Facebook. This is only one anecdote, but from my personal experience thus far, Facebook is still unfortunately the best place to find a needle in a haystack.

replies(2): >>19323466 #>>19323595 #

1. josephwegner ◴[06 Mar 19 22:31 UTC] No.19323595[source]▶

>>19323398 #

This is my same experience. Son has JIA. There is a JIA-specific website that connects you to JIA-specific support groups.... but there are none active near me, and I live in a very big city. I expressed this frustration to my wife who uses Facebook often, and she joined an active JIA community in moments.

I guess now we have two anecdotes. That makes us a statistic, I think?

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U.S. users are leaving Facebook by the millions, Edison Research says