Category Archives: Best practices

labsss

Lab Tracker and Patient Advocacy Tool

by Robert Pleticha Linda, a moderator on the atypical HUS community and volunteer with the Foundation for Children with Atypical HUS created tools for people living with a rare disease, or…

Behcet's syndrome community infographic

Creating a poll and infographic for insight into your rare disease

Case study: Behcet’s syndrome community poll and infographic Background: One of the moderators emailed the RareConnect team and suggested a poll of the international Behcet’s syndrome community to better understand what…

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How you can moderate on RareConnect

  Keep discussions on topic Distribute quality information Report suspicious activity or members Ask questions to RareConnect team: team@rareconnect.org Update information on your patient group, profile Stimulate and facilitate discussions…

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…

robby boy

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…

privacy

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…

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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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