Category Archives: Tip of the week

jovenes-poniendo-sus-manos-juntas_1139-1012

How do I set up a patient organisation for my rare disease?

Many people that visit RareConnect are interested in starting a formal rare disease patient organization to advocate for their disease and meet other people. We fully support that idea and…

social

2016 Rare Disease Awareness Campaigns Calendar

We took all the rare disease awareness campaigns that were sent in from around the world and created this calendar. If your date does not appear in the calendar, add it…

rseau sociaux

Rare Disease Awareness Days

This list of awareness days for different rare diseases has been gathered from EURORDIS members and RareConnect followers over the past few months. If we missed your date, please go…

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….

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…

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…