EURORDIS is conducting an on-line survey amongst rare disease patient organisations

The aim of this survey is to find out which are the research areas that should be given priority from the patient’s perspective. The survey is also designed to find out in what ways patients have collaborated with researchers and to what extent this collaboration was positive or negative.

Survey results

The results of this survey will help to acknowledge the role of patient organisations in research, and will contribute to shaping the future research agenda of the European Union. The results will also help national patient alliances advocate for more and better research for rare diseases at the national level.

Read more about the Major outcomes from the Rare Disease Day 2010 EU workshop