Social Networking

From WikiAdvocacy

Social networking sites have seen a dramatic increase in popularity, leaving many advocacy organizations wondering the best way to engage with and integrate this technology into their organizations. Information on Facebook is shared below, but feel free to help us expand and include information on other social networking sites, such as MySpace and Twitter.

Social media can be a very useful tool for interacting with your community. Many organizations use social media (e.g. Twitter, Facebook and others) as a broadcast communication tool, updating their community and thepublic about progress or new developments with their registry or biobank. This is just the beginning. Social media can also be used strategically to listen to and engage with your community. Radian6 has created a wonderful resource, 30 ideas for your social media plan in 2012 that provides insight on how to use social media more effectively. Once your social media plan is in place, be sure to time your posts for when your audience is most likely to be listening.


Where do I start?

Facebook has many different ways to be involved as an organization, such as Causes and Groups. It might be easiest to just start with your own personal profile so you understand what your constituents are seeing from the user side. "Friend them," watch their behavior, what attracts, what doesn't, join Cause Pages and Fan Pages of other non-profits and get their updates and announcements on Facebook and you'll pick it up. Or find a constituent/volunteer who's already "into it" and ask them to be a "virtual" volunteer leader of your Facebook presence to grow it organically. This article also discusses how non-profits can begin to use Facebook in general. To learn more about Facebook pages, you can read "The Insider's Guide."

The following is one organization's take on how to use Facebook:

Eleni Tsigas Preeclampsia Foundation

"When you do a Facebook Ad, including Boosted Posts, you can run it to current fans or with an exception criteria that does not include your current Fans. That being said, I would hesitate to boost ANY post unless there was a specific drive/aim in us doing so. Boosting it just to get visibility with no call-to-action is not an effective use of money. Driving general Likes on the other hand, does serve us well and is worth the investment, though if you ever got to the point where you had exhausted potential clients, I would recommend that you take a break for some time.

In addition, Facebook (and social media in general) raises AWARENESS, not funds. Email marketing is much better suited for that purpose, and better yet, peer-to-peer requests. Facebook does, however, remind people of important things like "Oh, I should go register for a walk and start fundraising." People make the mistake of assuming it is a panacea instead of one more tool in the communication arsenal.”

  • Causes

To become Causes NonProfit Partner, visit here. Any Facebook users will be able to see all your NonProfit's Cause Pages in one place that looks like this. But the NPO as an entity won't be able to manage relationships with these User-created Cause Pages without this approval from the Cause Application Company, Project Agape.

As an approved Partner, you'll be granted access to a different background ADMIN page that through a portal page that only organizations are be able to access. From there, you'll be able to "designate" which of all the Cause Pages out there is the "official" Cause Page of the organization from that ADMIN area. You can still need to create your own Cause page from the User side as a leader of the organization and then designate THAT one as the "official" Cause page. Or choose None as "official" and just receive donations as the chosen beneficiary of the multiple pages created to support your cause.

You'll also have options from your ADMIN area to "Manage Causes" and can "disassociate" any that you don't want to be associated with your Cause. You can also "Manage Donations," where you can see all your donors, download reports to add them to your donor database, have options for "thank them" using Facebook, etc. One point to be aware of: The official Causes Partner reports often list as Anonymous some contributions for which an individual donor is identified on the specific Cause page where the donation was made.(This depends on which box the donor checks at the time of the donation.) Unless you keep track of each associated Cause page, you will miss the opportunity to thank some donors who are identified on the individual Cause page but not on the Causes Partner reports. You can also administer Cause Petitions within your ADMIN area where you appeal for people to "sign" a collective petition advocating for some sort of change.

Then encourage any of your constituents who want to create their own Cause Page to do so and ALL of them can be set to "benefit" your 501(c)(3). Anyone can create a Cause page if they add the Cause application to their Facebook Profile. They can join lots of Causes and create multiple Cause pages for causes they care about. They "choose" who their Cause page will benefit from any nonprofit organization that is listed in Guidestar database.

Then keep creating ways in your campaigns/appeals/advocacy alerts to give your constituents a way to viral your message to everyone on their Cause page with "canned" text/graphics/links back to page on your website and you've got a movement. People always respond best to appeals made by people they know. Empower your constituents to be ambassadors of your messages. They get the experience of helping the cause they care about and have passion to share with others they know. You get people to reach more people with your appeals for the cause than you would ever reach in a top-down message delivery strategy.

More good information about Causes can be accessed from Facebook's Causes' FAQs and here.

  • Groups

Facebook Group pages are very easy to create also, but are more like an open or closed online group meeting space. Doesn't have near the tools for NPO communications and outreach and fundraising, but it has it functions. We have a group page for volunteers here, but we haven't done a lot with it except let it grow and share "news" posts and links. It's still grown to over 600 in last year.

An idea for patient privacy is to open your group page only to those who have signed up as members of your Association. Those who are NOT members, can be messaged as to their affiliation (I have a sister with this disease, my child has this disease…) The message is sent by going to the inquirer's own FB page and clicking on SEND A MESSAGE. It not only helps with patient privacy, but provides new members.

The only drawback to this system is if the person does not have the message ability on their FB page when one goes to message them to ask their affiliation….

Also, there are sometimes patients who, for various reasons, start another FB page on the same disease… these are usually not a big draw from the "official" disease page and serve a purpose for their group. One can ask them to be a Friend, posting when appropriate on these other pages, but not so often as to appear to be FB-stalking them.

  • 10 Tips for Non-Profits on Facebook - /



Twitter is a social networking site that begins with the question, "What are you doing?" Twitter is much more streamlined than facebook; user profiles are limited to name, location and a 140 character bio. Twitter status updates or "tweets" are also limited to 140 characters. They can include links to outside sites but cannot included embedded photos, video or other content. Twitter users can upload a profile picture and create a customized background for their page but cannot make further customizations.


Tweet: A message/status update on Twitter of 140 characters or less.
@: Putting the @ sign before a twitter username (i.e. @geneticalliance) will create a link to that person's Twitter page within your tweet
RT or Re-tweet: When a user re-broadcasts a tweet written by someone else. These posts usually begin with "RT @twitteruser:" to give credit to the person who wrote the original tweet.
List: Twitter users can create lists of other users on any subject they like such as Non-profit Resources or Rare Disease. Other users can follow these lists, gaining attention for the person who created the list and saving them from having to do the leg work of finding and adding all the different users tweeting on that topic.
Hashtag or #: This is a way of denoting a keyword of conversation topic. The word after the hashtag is clickable and will bring you to a display of every other Tweet which contains the same hashtag. These can be used to create a meta-dialogue or to track the conversation about a certain topic. Sometimes groups will schedule chats on Twitter, which are identified by a specific hashtag. Users can join in the chat just by clicking on the hashtag or by using a third-party site such as Tweet Chat.

Twitter Clients

A Twitter client can often provide more features and functionality than the main website. Although your content still appears on Twitter, and is still subject to the same limitations, a small line underneath your post will let others know what client you are using; i.e. "via TweetDeck." Some clients allow you to manage more than one Twitter account from the same place, and many will also let you update Facebook, LinkedIn and other social media sites simultaneously. Some also allow you to schedule your tweets to post at a later time.

Here are some popular Twitter clients:

Best Practices

Follow people who follow you - If someone follows you, it is considered courteous to follow them back. If you are concerned that following too many people will clog up your Twitter stream, create a list of those most important to you so you don't miss out on anything they are saying.
Re-tweet - It's that simple. If someone says something funny, interesting or thought-provoking, share it with your network. It's a great way to get them to notice you and maybe remember you the next time you want your own content re-tweeted. Always make sure to start a re-tweet with "RT @username:" Twitter doesn't do this automatically when you click the re-tweet button; if you just click the button, your RT won't show up in their @ feed, so you won't get credit for helping out!
Get involved in the dialogue - Twitter is not a place for wallflowers. It's also not a place to constantly promote yourself or your brand. There is a place for that, but self-promotion should make up less than 10% of your tweets, on average. If you participate in the conversation and post content that is valuable to your followers, you will form lasting relationships which can translate to valuable partnerships on the web and in the real world.

Read the article, When Tweets Go Wrong - And How to Do it Right to learn about how a company handled its mistake and for more tips.

Discussion Forums

Teen Discussion Forum

Teen discussion forums are online discussion sites for teenagers to share their stories and experiences with one another. People participating in the forum may cultivate social bonds and interest groups from a topic made from the discussions. Since participating teenagers will most likely be underage, it will require a different set of development and maintenance methods than the ones used for a regular discussion forum. Here are several issues to consider:

Who would be the administrator for such a site?

An administrator is necessary for two reasons:

  • Kids might end up inadvertently submitting incorrect medical information that could then go viral
  • There is the risk of improper posts (sexual, harassing, flaming content…)

Should a Listserv or a chat area be offered?

Again, both would require supervision and the time and effort of a staff member.

What other issues do I need to look out for?

There is a great deal of liability involved when dealing with any activity including minors. Some cyber insurance would not cover such an undertaking – at least not without resistance and a costly rider.

Recommended Links

If you would like to see examples of social media pages, visit Genetic Alliance's pages:

Questions and Answers

  • How has your organization responded to requests from families who want to start a group on Facebook? Is it better to start one as an organization in order to keep control?
    • We did start our own Facebook Group and Cause so that we would have some control. We have raised a couple hundred dollars on the site (with literally no work).
    • We have a Facebook Causes page and our members have their own Facebook pages. Then they can join our Facebook cause and leave comments and such on the cause page and information on their own pages.
    • I think there are several issues to think about here. One is whether you can show up on every blog, online group, MySpace or Facebook venue. I think they are just going to proliferate & at some point you can't control the space/content/representation. The terms and conditions of these online spaces are widely variable. In some everything that's shared/written becomes the property of the sponsor who can edit, use, re-publish or use for publicity. There is no privacy, no ownership, no accountability. Though they seem like "safe spaces", many of them are filled with both spammers and porn folks. Also, many sites are searchable by google or other search engines. Cyberspace is notoriously hard to control, if control is a top priority of the organization. That too requires an investment to maintain. On the other hand, presidential candidates have gotten elected recently using these social networking tools successfully and raised $500 million online, largely from people giving $100 or less.

  • What happens if other Facebook Groups or Causes exist for the same condition as mine?
We as an organization (Cystinosis Research Network) started a Facebook cause (which was very straightforward to do) under the title "Cystinosis". We've raised a few hundred dollars and have had nearly 1,000 join the cause with almost no effort.
We've recently run across another cause for cystinosis which was started by someone we aren't familiar with. Donations are going to the other advocacy group in the U.S., which is fine, except he used our logo, website address and vision and mission information. I've "facebooked" the cause administrator just to point out the inconsistency and the confusion it might provide for possible donors with no response back.
Finally, one of our medical advisory board members decided to start a CRN Facebook cause herself, as she didn't find CRN when she searched (our fault, should have titled our cause "CRN" specifically, not the general "cystinosis"). Donations from her cause go to CRN, and frankly, she did a much nicer job than us in setting it up! We've decided that having the two sites is complimentary in the end.
I guess my point is that Facebook is a fairly uncontrolled space, putting your organization as a cause can provide very easily collected modest donations and raise awareness, but there is always the possibility (as in many situations, I suppose, like blogs, etc.) where other individuals can use information from your organization without your knowledge, which may or may not lead to any significant misunderstandings or harm.

  • How does a group go about getting permission to use photos from conferences on social media websites and in enewsletters? Additionally, if photos are used on Facebook, how does 'liking', 'sharing', and 'tagging' interact with privacy violations?
  • Team Sanfilippo has a Facebook page and a private MPS community page as well. We have put posts up on occasion asking permission and parents have responded in several ways. Some have said use whatever you see online of my child, others have sent us a few pictures and and some have said to take anything from their child's personal site we want. So we print those threads out in case of an issue down the road. We've never run into any issues so far.
  • We have a photo/video release at our conferences that we ask families to sign, which basically is a waiver for any electronic or print distribution. However, sometimes families just send us photos via email, etc., to be used in our newsletter and don’t necessarily provide a formal release. For many years before we had an electronic newsletter, the pictures were used in our print newsletter. However, we have now decided to implement a policy wherein we obtain a formal release for use of any photos submitted by any mechanisms. I do have to make the disclaimer that we try not to identify any minor by name in photos. We do have a FB page, and we have “turned off” the ability for anyone other than the administrator to upload photos and our policy is not to upload any photos organizationally of patients. We also have a private password protected online community which does allow the user to upload pictures to their personal page. The community use agreement contains a disclaimer to the effect that although the site is private and password protected, we are not responsible for and cannot protect against the potential use of the photos outside the online community (because a member copies it and uses it elsewhere).

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