This congress was supposed to take place in Stockholm, Sweden from May 14-15. Due to the Covid-19 pandemic, however, the event had to be held online. Sophie Kitzmüller, study coordinator and head of the EB Academy attended this conference.

A virtual congress center was set up with various “rooms” in which live lectures were held. A chat function allowed the attendees to ask question quick and easy. 1.500 participants from 57 countries were informed about latest trends and progresses and discussed their ideas.

The topics of the lectures were broad: How can a fast diagnostic procedure for rare diseases be promoted? How can rare diseases benefit from personalized medicine? What are the advantages of global networks? How can patients and their representatives help to convince decision-makers of their concerns? The insights gained will be collected, sorted and one or the other idea implemented in new projects.