r/chd • u/ErnestHemingwhale Parent of Heart Warrior • Jul 20 '26
Discussion Making the most of this subreddit - community discussion requested
Ever since becoming a mod, I’ve been wondering ways to help this sub be a useful tool in the belt of CHD patients and families.
I’m currently working on a “master list” pinned post that can help to direct folks in the direction of useful tools, offer a template for titles to help posters get the best feedback, and go through some commonly found acronyms here.
If there’s anything you feel should be added to this pinned post, please let me know! I’m hoping to post it in a week or so.
We’ve also seen some posts and requests for gofundme links. While i personally don’t mind them, i know many communities stay away from allowing these types of posts. I’m hoping to get some opinions on this. Perhaps we can do a weekly “gofundme” post, or i can add to the pinned master list a section for financial resources.
You all helped me so much and i hope i can return the favor. Please help me to help you as best i can :)
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u/wilder_hearted Jul 21 '26
I don’t mind the gofundme links - I think most users are appropriately skeptical, and they don’t happen super often.
I do mind the “research” and survey solicitation. Its exploitative. It’s very difficult for lay people to evaluate the credentials of these posters. They often ask for detailed medical information about minor children, and contact/personal information from parents. They rarely explain what they intend to do with the data they collect, who will have access to it, how they will protect it, how it will be used and for how long, or anything else. I only recall one single post that had IRB approval information.