Category Archives: Best practices

Welcome

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…

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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…

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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…

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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…

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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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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…