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Aug 1, 2019 · Facebook Closed Groups? in Strategy, Policy & Best Practices

Hello – Our situation is a little different, as we are a patient organization, but feel free to use any of the following guidelines that are useful. I think the key is to require that potential new members agree in advance to follow the group rules, which you can do with the "questions" feature.

https://gdatf.org/news/facebook-group-guidelines/

I personally feel that Facebook groups are a HUGE headache to moderate, but right now, that's where most of our community is engaging.

Aug 1, 2019 · What do you use to send patient e-newsletters? in Platforms, Software, and Tools

Hello – Not sure if this is an option for you, but we are currently using Vertical Response, which offers discounted pricing if you are a nonprofit. https://www.verticalresponse.com/pricing/non-profit/application

Aug 1, 2019 · Twitter Got a Makeover in Platforms, Software, and Tools

Not a fan of the new format, which takes up a ridiculous amount of space for the menu items on the left at the expense of the header and the actual feed. I've heard from others that a benefit of the new format is being able to quickly switch accounts without logging out and logging back in again. The instructions below show you how to do it, although the article doesn't do a good job of explaining that you need to look for the + sign in the top right-hand corner of the box after you select "More".

https://help.twitter.com/en/managing-your-account/managing-multiple-twitter-accounts

I'm going to pass on this option, as mingling my personal and professional Twitter feeds seems like a recipe for disaster, but it might be useful for others!

May 24, 2019 · Facebook Groups in Platforms, Software, and Tools

The admin issue shouldn't be a problem, but be aware that when you have a linked Page & group, some functionality can be glitchy if you are interacting in the group as *your page* versus *yourself*. There will be an option to toggle at the top left-hand side of the group.

May 24, 2019 · Searching for others who run non profits in Give & Get Advice

Hello – I'd be happy to participate! I actually met a colleague of Linda's a few weeks ago while exhibiting at a meeting for endocrine surgeons!

May 15, 2019 · FTC Complaint Says Facebook Sold Info from Closed Patient Groups (!!!) in Platforms, Software, and Tools

Hi Dan – This is the company we are working with. One nice feature in addition to the new group is that the site will have a repository of info on Graves' disease that comes from credible sources – medical associations, peer-reviewed research, etc.! https://rarelifesolutions.com/

May 15, 2019 · FTC Complaint Says Facebook Sold Info from Closed Patient Groups (!!!) in Platforms, Software, and Tools

Also, I've found that the "Health Support Group" status appears to be only a pilot program now and isn't available to everyone. I'm not sure if it will be that useful. The advantage is that a group member will be able to ask a question anonymously – but then if group members want to respond with their own experiences, that info is NOT anonymous!

May 15, 2019 · FTC Complaint Says Facebook Sold Info from Closed Patient Groups (!!!) in Platforms, Software, and Tools

Hi Dan – Fair point that this is just an accusation…and has not been proven!

We were already in the process of working with an outside vendor on a site that will include a "social wall". Between this issue and the fact that moderation is so time-consuming (particularly trying to find new replies on posts where there are multiple comments), I really hope the new group takes off. (Although I don't know that we would shut down the FB group completely.)