Tag Archives: Social media

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List of #RareDisease Hashtags

Hashtags make it easy to follow a conversation and unite a community around a particular rare disease, or just the #RareDisease topic in general. Here is a list of just…

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Our experience with a crowdfunding campaign

Earlier this year, the RareConnect team actively participated in a crowdfunding campaign led by the Spanish Association of Ectodermal Dysplasia and a father with two children affected by this rare…

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Use Followerwonk to find other rare disease patients

We would like to introduce you a new tool we’ve started using on RareConnect. It’s called Followerwonk. http://followerwonk.com/ Followerwonk offers different features and some of them quite advanced, like compare…

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Have a presence on Google+

by Robert Pleticha Here are two free Google services we are using, and why you should use them too.   Another social network? I’m trying to figure out Twitter, why…

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Using Thunderclap to unite your crowd on social media

by Robert Pleticha There are around 985 million new Facebook posts and 400 million new Tweets made every day. How is your disease and message going to stand out? Do…

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Get your rare disease patient association’s Facebook page more “likes”

by Robert Pleticha Rare disease patient groups use Facebook for a variety of reasons including establishing a communication channel with their members and ensuring quality information about the disease is…

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Twitter Tips: Useful strategies when writing Tweets

by Robert Pleticha Burston-Marstellar is a PR firm that has archived all of their tips for using Twitter effectively in to one place. We hope you find it as useful…

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Adding photos to your posts

by Robert Pleticha 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…

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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…

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RareConnect Badges

How to promote your Community Continual and consistent promotion of your RareConnect community is critical to┬ámember participation. When promoting this platform highlight the benefits of your community like human translation…