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Eurordis - Rare Disease Europe


64 faculty members

Faculty from 10 countries

313 in-kind hours dedicated to the faculty

Meet our faculty



Through the Open Academy online courses and schools, you will meet experts from top EU and national institutions, research centres, rare disease patient organisations and more, who will share their experience through presentations, videos, articles, case studies, quizzes and discussions. Our faculty has demonstrable expertise in their area of knowledge, strong academic research experience and a commitment to advancing the education of rare disease patient advocates.

We work together with the experts through different Programme Committees to design the programme of each of the schools to make sure they stay relevant and pertinent to our evolving environment. The faculty also work with us to create the content of the online courses.

What do our faculty members say about the Open Academy?

“It is important to involve patient advocates in research – as a researcher, I can benefit a lot from the input from patient advocates. However, if they are educated about basic principles (such as achieved by the Open Academy) this makes their contribution even more useful because they have a frame of reference and a context.

The Open Academy helps scientists understand patients better, and patients to understand scientists better resulting in a dialogue that is much more constructive.”


Annemieke Aartsma-Rus, Leiden University Medical Center, Netherlands

Interested in becoming part of our faculty?

Contact us!

Rachel Butcher, Open Academy Manager - Training Coordinator