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….


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…


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…


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

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 better understand what…

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…


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…

question baby

How you can moderate on RareConnect

  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 facilitate discussions…