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…

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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…

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Creating a landing page on social media sites

by Robert Pleticha During some of our workshops, people have asked, “What is the minimum I can do on social media?” The answer is to at least create an account…

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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…

promoting

Stay focused

by Robert Pleticha People Liked your page, or Followed your account for a reason: they are interested in the disease your page seeks to support. Don’t overuse off topic posts,…

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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…