During some of our workshops, people have asked, “What is the minimum I can do on social media?” The answer is to at least create an account and landing page on Facebook and Twitter for your patient group. Patients are searching those websites for information on their disease, and need to have as many ways to find you and your website as possible. Don’t get forgotten about as the way people search for information on their disease changes to rapidly.
At the minimum, a landing page will direct people to your website, let them know you exist, and hopefully lay the foundation for building that account when the human resources become available. If you don’t get 1,000 likes or followers the first week, that’s okay. People are still viewing the profile and following the path you have laid down to get to your website and network of support.
Make sure to include:
-Information in the about section or profile page. On Facebook, you will need to create a “Page” connected to an individual’s account. Once the Page has been created, you can add others as Administrators to help you complete the sections.
-Your website and contact information.
-Your logo or photos that show activities of your group.
-A few “starter” posts so your profile is not completely blank. Consider a link to your RareConnect community if you have one and the key documents or brochures your group has published.
If you have any questions on getting started with a basic account, please contact us. For the more advanced people out there, see Marta’s presentation on using social media to find disease information. Don’t forget to follow RareConnect on Facebook and Twitter.