crowdfund

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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RareConnect workshop during the EURORDIS Membership Meeting 2014

The RareConnect team was pleased to welcome over 60 patient group representatives to its workshop on Online Communities during the 2014 EURORDIS Membership Meeting in Berlin. To view the presentations, please click…

orpha

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….

support

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…

Living with Wegner's

Never miss an article published about your rare disease

by Robert Pleticha As a rare disease patient advocate, it is important to stay up to date on recent scientific publications in your disease area. Whether your disease has new…

followerwonk

Use Followerwonk to find other rare disease patients

We would like to introduce you a new tool we’ve started using on RareConnect. It’s called Followerwonk. http://followerwonk.com/ Followerwonk offers different features and some of them quite advanced, like compare…

labsss

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…

computer man

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…

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…

Thunderclap logo

Using Thunderclap to unite your crowd on social media

by Robert Pleticha There are around 985 million new Facebook posts and 400 million new Tweets made every day. How is your disease and message going to stand out? Do…