promoting

Promoting your RareConnect community

Why promote your community?   The RareConnect project is a partnership. The community needs your expertise and encouragement to thrive as an international space for people affected by a rare…

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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search

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…