- June 11, 2013
RareConnect workshop during the EURORDIS...
The RareConnect team was pleased to welcome over 60 patient group representatives to its workshop on social media during the 2013 EURORDIS Membership ... - April 24, 2013
RareConnect Privacy Checklist
We want to keep you and your health information safe and private online. RareConnect does not sell data to third parties or in any way share the infor... - April 23, 2013
Highlighting the best practices of moder...
Highlighting the best practices of moderators: Frank on the Hereditary Spastic Paraplegia community Frank Davis is the President of the Spastic... - April 17, 2013
Posting open questions to encourage part...
Discussions on online communities can be difficult to get started and maintain. Some statistics suggest that only 10% of online community members actu... -
Creating a landing page on social media sites
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…
RareConnect workshop during the EURORDIS Membership Meeting 2013
The RareConnect team was pleased to welcome over 60 patient group representatives to its workshop on social media during the 2013 EURORDIS Membership Meeting in Croatia. To view the presentations,…
Stay focused
People Liked your page, or Followed your account for a reason: they are interested in the disease your page seeks to support. Don’t overuse off topic posts, sharing of pages…
Adding photos to your posts
Use photos, videos, memes, and infographics whenever possible to make your posts more engaging and share able. Just a headline and a link may not catch a reader’s eye. This…
Promoting your RareConnect community
Are you a moderator or patient group that has launched a community in partnership with EURORDIS, NORD, and other rare disease associations on RareConnect? This article has some reminders of…
RareConnect Badges
How to promote your Community Continual and consistent promotion of your RareConnect community is critical to member participation. When promoting this platform highlight the benefits of your community like human translation…
RareConnect Privacy Checklist
We want to keep you and your health information safe and private online. RareConnect does not sell data to third parties or in any way share the information you add…
Highlighting the best practices of moderators
Highlighting the best practices of moderators: Frank on the Hereditary Spastic Paraplegia community Frank Davis is the President of the Spastic Paraplegia Foundation, a person living with hereditary spastic…
Posting open questions to encourage participation
Discussions on online communities can be difficult to get started and maintain. Some statistics suggest that only 10% of online community members actually participate in discussions. So how can you…
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