Category Archives: Best practices

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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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RareConnect webinar: How to start an awareness day for your rare disease

RareConnect has been collecting the dates of different global and national awareness days for different rare diseases in this blog post.  Many patient groups ask us how to start an awareness…

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How to create a profile for a rare disease community on RareConnect

See our list of current communities on RareConnect here: https://www.rareconnect.org/en/communities We work in partnership with rare disease patient associations to create those communities and offer community management support, human translation and…

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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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Crowdfunding and rare diseases: an expanding phenomenon

by Robert Pleticha We did a webinar about crowdfunding last year, and I attended the first ever UK Crowdfunding Day last November. Ever since, I’ve been thinking about how more rare disease patient groups…

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Rare disease patient groups using Orphanet effectively

Orphanet is the most important database in the European Union for rare diseases and orphan drugs for the general public.  It contains information about 6 000 diseases and is freely accessible….

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5 ways to engage your online rare disease community

by Robert Pleticha People living with a rare disease have a lot in common. No matter the country, religion, or culture, everyone affected by a rare disease shares a strong…

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Lab Tracker and Patient Advocacy Tool

by Robert Pleticha Linda, a moderator on the atypical HUS community and volunteer with the Foundation for Children with Atypical HUS created tools for people living with a rare disease, or…

Behcet's syndrome community infographic

Creating a poll and infographic for insight into your rare disease

by Robert Pleticha Case study: Behcet’s syndrome community poll and infographic Background: One of the moderators emailed the RareConnect team and suggested a poll of the international Behcet’s syndrome community to…

question baby

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: team@rareconnect.org Update information on your patient group, profile Stimulate and…