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. Our Schools offer a blended learning approach including eLearning courses, webinars and in-person training as well as research visits and networking opportunities.

Our programme is developed with expert trainers identified from the research, regulatory, industry and patient community to build competence and provide support and advice. Thanks to EURORDIS’ experience and reputation, trainees receive up-to-date, actionable content delivered through engaging learning methods, leading to the achievement of concrete results.

Amongst other examples, Open Academy alumni have gone on to:

• • Participate in or set-up a disease-specific CAB (Community advisory board) to help design clinical trials and identify the most relevant endpoints for patients
  • Co-design or jointly submit proposals for research projects, ensuring the project meets the needs and priorities of the patients
  • Register as a patient expert and participate in activities in the European Medicines Agency (EMA) such as protocol assistance and scientific committees