Rare Disease Report

10 Social Media Golden Rules for (Rare Disease) Conferences

JUNE 15, 2015
It's time for conferences, especially those in rare disease, to step into the 21st century with the rest of us. What I'm talking about is social media, and its integration into the fabric of our events and conferences.

As an External Advisory Board member for the Mayo Clinic Center for Social Media, I get it that I'm just a little more into social media than your average bear. I have mutiple accounts on Facebook, Twitter, Instagram, and YouTube, adding to that Pinterest, Vine, Google+, and the new and ever-so-cool Periscope.

But I am not unlike many in rare disease. And where the patients go, industry, and therefore conferences, must follow, not only for disease insights, clinical trial recruitment, and advocacy, but also to not be left behind as patients become even more boldly empowered in their own drug development, regulatory advocacy, and large-scale fundraising.

There are a few who do it right. But a lot more who do it wrong or not at all. And in fact, for rare disease confererences, which are often smaller than typical large pharma conferences (albeit growing every day with the attractiveness of rare disease research), they have an easier opportunity to do it right.

There are fewer experts. Fewer companies. Fewer FDA review groups. Fewer advocates. It should be the case that many of them are following each other on one or more social media channels, although I find this unfortunately not to be true.

So what would make conferences more attractive from a social media standpoint?

My 10 social media golden rules for conferences, especially those focused on rare disease:

1. Register your conference hashtag at Symplur well in advance.
2. Organize a tweet chat in anticipation of the event, or even better yet, in the planning stages of the event as well.
3. Publicize your hashtag on all pre-conference materials, conference handouts, posters, slides, and speaker bios.
Obtaining buy-in of your key social media and in-person audience can never start too early.
4. Provide wifi. Enough said. Whether it's free is the choice of the sponsor, but unless accessing it is a piece a cake, have handouts and signs with directions on how to access.
5. Provide power strips at each table. I was once at a conference where I was tweeting on an iPad, blogging on a Mac, and texting on my iPhone. I was not alone. Rare disease advocates are the power users of the Internet (just ask Susannah Fox); let them promote your event and discussions for you. Give them the tools. Don't make them burrow in the corners by the outlets.
6. Always include all social media contact points for speakers on event materials, name tags, slides, and initial tweets/posts during the talks. Always request and include attendee social media contacts (or at least Twitter handles) in conference attendee directories and on name tags.
7. Assign at least one person to monitor and respond to social media inquiries, comments, and chatter. For smaller conferences, one informal designee may be enough, but for larger conferences, there may be more than one and they may work in shifts. If handling specific problems through the event or sponsor account, be sure they "sign" their tweets or comments with their initials. ^MH
8. Engage your virtual audience by taking questions from social media and responding from the stage.
9. Organize a tweetup at your event with special privileges or cocktails. Your social media mavens are your ambassadors for your event. (If you don't know what a tweetup is, then you really need this list.)
10. Use an app for your event. It doesn't have to be a dedicated app; there are several event apps that you can use. Include the above information within the app and have social media integration with the agenda, reviews, check-ins, and commentary. The app used at the DIA conference is the best one I've seen so far.

Bonus rule: Make the social media engagement fun with various contests about tweeting, checking-in, and posting about the event. It engages your audience and creates free publicity. Again, DIA wins my award in this category.

Conferences that fail at too many of these rules will simply frustrate or alienate your social media savvy audience. Why not make them your best friend and biggest publicity source by catering to the needs of the social media set. You'll thank me later.

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