Those of us in the rare disease community are spread out far and wide, but thanks to social media, we are have robust and informative discussions about topics affecting the rare disease community. Whatever topic you may be interested in, you know that there are others in our community who want to have the same discussion. It is also a great way to engage in discussion with policy leaders, researchers, and other rare disease leaders.
Tweetchats are organized discussions centered around a specific topic scheduled for a specific time. Around rare disease day, there are multiple tweetchats that are scheduled by different organizations. Everylife Foundation for Rare Disease‘s Stephanie Fisher (@RarePOV) does a great job of keeping the community up to date on the latest social media opportunities.
If you have never been involved in a tweetchat or not yet on twitter, let’s get you set up. It’s quick, easy, and fun.
- Come up with a username that represents who you are (Mine is @RareDiseaseAdv). You can see if that username is already in place by going to http://www.twitter.com/nametotry.
- If the name you want is free, go to www.twitter.com and click on “Sign up” and fill in your info
- Click on “edit profile” and fill out your information. You can use hashtags such as #raredisease or #gaucherdisease in your profile, which helps those who are searching hashtags find your account
- Start finding people to follow. You can do a search for topics or hashtags that are interesting to you. For those involved in rare disease, check out the list of people I am following to see if any interest you and just click “follow” (and yes, a few celebrities as well!)
So now that you are all set up, what next? Just log into twitter at the time of the tweet chat and search for the hashtag (#patientdriven, #NIHchat, #ABCDrBChat) and follow the conversation. You can also use Tweetchat.com, which makes it easy to participate.
Still need help on the twitter basics or dive into more advanced uses? Click here!
