Category Archives: Best practices

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Basic notions to get the most out of Google

We know, you were told not to google your disease but let’s be honest you did it and if you’re lucky you got tons of results and maybe it was…

Canned Responses

Use Gmail Canned responses to speed up replies

A few days ago we discovered a Google Feature called “Canned Responses”. We found it perfectly handy when you need to send similar email responses out to a number of people….

General Discussion

Plant a flag!

  When we were working on the new RareConnect re-design; we knew we wanted to have a big place where people could discuss general topics that are not specific to…

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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…