Can we have some protection from the techbros fishing for business ideas and the folks coming in thinking rare disease is where you start in this sub?
Can we get some kind of auto responder on posts from people looking for a diagnosis? At least help them structure their thinking and forward them to more appropriate subs for someone at the start of their journey?
Im all about helping people but this sub should be a space for rare disease information and patients. I'd prefer to shape posts so we're getting folks who should be considering rare disease and need help vs folks who apparently stumbled on this sub five minutes ago.
I know it's a fine line but I think we can make the point of not asking here until you've had extensive testing and also requiring a summary of that testing bc if they want help we need that information.
Basically if you haven't ruled out all that common stuff and don't have significant family history, we're probably not the place for you to ask for diagnosis help right now.
An auto responder has the benefit of giving people information on how to think about rare disease which raises overall awareness.
Also the tech bros I've seen here don't understand rare disease enough to be worth our time. They need to ask better questions or pay us or not be here.
Rare Disease is a big population that gets ignored. Can we limit the energy hijacking?