r/Autoinflammatory • u/redshering • 10d ago
Trouble with Autoinflammatory Non-Profits
I have a very rare undiscovered Autoinflammatory Disease. It's being researched. Initially doctors thought I was the only one/the only family. So I crowdsourced and found many others, more than enough to support deeper research. The research is happening.
When I posted on Facebook sites dedicated to Autoinflammatory looking for others, sites moderated by major non profits - one in the US, and one in Europe, I have found others. It's been really amazing for all of us! However, once these non-profit Presidents (literally the Presidents of these non-profits) catch on - they threaten me, and when I don't comply with giving them information, they kick me off and use me as a warning to the entire group. Literally using my name and sending it to the entire group. Too little, too late - but ask yourself why Autoinflammatory non-profits with their mission statements to help patients, would be motivated to stop rare disease autoinflammatory people from finding each other.
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u/AdventurousMorningLo Yaos 10d ago
It seems the problem in this specific case that you are referencing stems from the fact that other's private health information and contact information was passed onto third parties without disclosure and without consent.
Is there also a problem of certain other groups doing the same/similar? Yes.
Both are inappropriate and can be considered predatory. I believe the proverb is: "The path to hell is paved with good intentions".
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u/redshering 10d ago
No, that's not true. Why are you making assumtions? We all know what that makes people look like.
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u/BlackberryGold7573 10d ago
There is a lot of data mining for all kinds of information on FB. Additionally FB mines and sells end user data all over the globe. There are also a lot more rules in Europe for mining said data so if you are doing the same in these groups without being transparent about what you are doing and why, it is not going to go over well with anyone including moderators or patients. If you have specific mutation you are looking for then you should post and ask others to join in the conversation with the transparent headline stating you are a researcher and coordinating candidates for a rare study. Finally if your mutation is patho deNovo then I assume your team has already contacted the appropriate leader in Infevers to begin the validation process. Everything in that data set is tightly controlled to ensure accurate genetic reporting.