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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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How you can moderate on RareConnect

by Robert Pleticha Keep discussions on topic Distribute quality information Report suspicious activity or members Ask questions to RareConnect team: [email protected] Update information on your patient group, profile Stimulate and…

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How to request a translation on RareConnect

RareConnect’s communities are translated by human translators across 6 languages: English, German, French, Italian, Portuguese and Spanish. Here is how it works: All stories in the Understand section are translated…

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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 5 languages. Analysing our Facebook…

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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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Welcome new members that join the community

by Robert Pleticha 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….

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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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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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Putting a face on the disease: recording a basic patient testimony video

by Robert Pleticha The power of patient stories to illustrate how to live with the disease is extremely powerful. When patients can read experiences similar to their own, and gain…