Category Archives: Social media case studies

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How to advocate for Rare Diseases on social media

“We’re thrilled to introduce you to our first-ever collaboration on the blog! Anna Suarez is an advocate for patients, caregivers, and anyone impacted by mesothelioma, which is a rare cancer that is diagnosed…

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How to get more impact from your Facebook publications: geolocation

One of the most interesting functionalities Facebook has to offer is the possibility to geolocalise your posts. As you already know, RareConnect is available in 8 languages. Analysing our Facebook…

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RareConnect webinar: How to start a Twitter account for your rare disease

  Download the slides Descarga la presentación en ESPAÑOL. SPEAKERS: Rob Pleticha (@robpleticha), Online Community Manager RareConnect & Emma Rooney (@blumencasey), Gaucher disease patient advocate Why start a Twitter account? How can I…

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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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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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Crowdfunding for Rare Diseases

by Robert Pleticha There has been an increase in crowdfunding projects and websites over the past year. It seems that crowdfunding (gather small amounts of money from individuals) and rare…

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#RareDisease Patient Advocates: Follow These 25 Twitter Accounts

by Robert Pleticha We collected our favourite 25 Twitter accounts that any #RareDisease patient advocate on Twitter should be following:   RareConnect Here Connecting rare disease patients globally. RareConnect is…

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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…