Welcome new members that join the community
Sending a welcome message helps inform new members about your patient group’s activities, your role as a moderator, and invites them to join an active, responsive community. You can easily…
Category Archives: Best practices
Answering general questions on rare diseases
by Robert Pleticha The RareConnect team receives many general rare disease questions by email through the contact section of the communities. For example, What is/are the treatments for paraneoplastic neurological syndrome…
RareConnect workshop during the EURORDIS Membership Meeting 2013
by Robert Pleticha 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…
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…
Finding information on rare diseases
Rare disease patients can often find quality information on their rare disease from patient support associations, online social networks, and their doctor. But sometimes a disease does not show up…
