Social media can be a powerful tool for rare disease groups/organisations. It gives small, geographically dispersed rare disease communities cost-effective ways to connect, share stories and information, and access practical and social support.
- Are you a rare disease group/organisation leader or team member using social media to build community engagement?
- Would you like to establish a trusted, credible, legally compliant and safe online space for your community?
- Are you an admin or a moderator of a rare disease Facebook group(s)?
- Would you like to strengthen your online community, maximise your group’s/organisation’s online presence and create positive and valued engagement?
- Would you like to better understand your obligations and manage risks associated with moderating online communities?
If you answered yes to any of the above questions, Quiip’s Facebook Groups and Social Media Risk Training for Rare Disease Organisations is for you.
This training has been customised specifically for RVA Partner groups/organisations by Quiip, specialists in online community building and social media. The training recognises the sensitivity and complexity of the work rare disease groups/organisations do and provides targeted guidance to help leverage social media while managing potential risk for groups/organisations and individuals.
Quiip has a deep understanding of the challenges and opportunities of using social media. They have worked extensively with diverse not-for-profit groups, empowering them to make a meaningful impact through social media.
Note: this training is available to RVA Partners only. Learn more about becoming an RVA Partner on this page.
Facebook Groups and Social Media Risk Training for Rare Disease Organisations
The course consists of three modules:
Module 1: Course Overview
Module 2: Building Successful Facebook Groups
- Building Online Communities
- Defining and Establishing Your Community
- Setting Up Your Facebook Group
- Understanding Your Community Members
- Moderating the Community
- Challenges and Opportunities When Building Online Communities
Module 3: Social Media, Risk and Governance
- Types of Risk
- Managing Risk
- Moderation Framework
- Risk and Response Matrix
- Risk Scenarios
- Managing Medical and Health Related Risks
- Managing Misinformation
- Course Reflection and Evaluation
The course takes approximately 4-5 hours to complete and is self-paced.
How to access the course
This training is available to RVA Partners only. Learn more about becoming an RVA Partner on this page.
RVA Partners can access this course via RVA’s Online Education Portal. If you haven’t already, you’ll need to register on the site to enrol in the course.
Acknowledgements
Facebook Groups and Social Media Risk Training for Rare Disease Organisations has been developed for the rare disease community by Quiip with funding from RVA’s Education and Mentorship Program. We thank program sponsors BioMarin, Pfizer and Sanofi for their support.
