The EURORDIS Open Academy accompanies patient advocates by offering rare disease-specific comprehensive training programmes that empower advocates with the knowledge, skills and confidence they need to engage with different stakeholders as equal partners. Their schools, supported by ERDERA, offer a blended learning approach that includes e-learning courses, webinars, in-person training, as well as research visits and networking opportunities.

OIFE at Open Academy in Barcelona 2026

This year, OIFE was represented from May 25-29 in Barcelona by our Polish delegate Aneta Gałązka. EURORDIS brought together 70+ patient advocates, researchers, and community leaders from across Europe for the culmination of their six-month learning journey with the EURORDIS Open Academy.

Quote from Aneta: 
«It was a really valuable experience, with the chance to engage with institutions like the European Medicines Agency, ERN-RND, and HTA bodies working at the heart of rare disease research and care. One clear takeaway for me is that meaningful patient involvement isn’t optional actually it’s what makes research truly ethical, feasible, and innovative. I also had the chance to share a personal story from the OIFE Youth Event 2025, including my passion for diving. I’m leaving this programme with gratitude, new insights, and an even stronger commitment to patient advocacy and to ensuring that lived experience is genuinely valued in decision-making.»

Read the report from this year’s courses here.

An inspiring experience bringing together patient advocates, researchers, and experts from across Europe to advance rare disease research and patient engagement!

Read more information about the Open Academy Schools here.

We need more patient experts!

OIFE’s goal is that all projects affecting OI directly should have some kind of patient involvement. The purpose is to ensure that our needs, concerns and expectations are properly addressed and considered in different phases of a project. Sometimes the input from patient experts are needed, and this is why we encourage individuals to access courses such as Open Academy.