General News
13 January 2026
Second edition of the Data, Ethics and AI training for rare disease advocates
Summary
- Applications are open for the second edition of the Data, Ethics and AI training for rare disease advocates
- The programme combines online learning with in-person training in Barcelona in September 2026
- The training is delivered by Open Academy with support from ERDERA and is free of charge for participants
- Rare disease patient advocates and early-career researchers are encouraged to apply
A new edition of the online training programme “Navigating Rare Disease Research: Data, Ethics, and AI in Europe” will take place in 2026. The programme is designed to support rare disease patient advocates and early-career researchers who want to better understand how data, ethics, and artificial intelligence shape rare disease research in Europe.
Following a strong first edition, this second round continues under the Open Academy Schools supported by ERDERA. The training reflects a growing need within the rare disease community for practical knowledge that allows patients and advocates to take part in research discussions as informed and equal partners.
What the training offers
The programme is designed for a small group of 20 participants to ensure meaningful exchange and interaction. It combines online learning with in-person training and networking.
Participants will take part in 6 to 8 hours of virtual instruction spread over five months, followed by two in-person training days on 14 and 15 September 2026 in Barcelona, Spain.
The curriculum focuses on core topics that are increasingly important in rare disease research. These include data management, ethical and regulatory frameworks such as GDPR and informed consent, and the growing role of artificial intelligence in research and healthcare. The programme also explores data sharing, patient perspectives, and international collaboration, with a strong emphasis on real-world application.
A programme built for patient advocates and early-career researchers
This training is primarily aimed at rare disease patient advocates active in Europe who want to strengthen their role in research and advocacy. PhD students and early-career researchers, up to two years post-PhD, are also welcome to apply.
Through a blended learning approach combining eLearning modules, webinars, and face-to-face sessions, participants gain both knowledge and confidence. The programme is developed and delivered by expert trainers from across the research, regulatory, industry, and patient communities.
Graduates also become part of the Open Academy alumni network, which offers continued learning opportunities, peer support, and access to additional resources and networking.
Funding and accessibility
Thanks to ERDERA’s financial support, the programme is provided free of charge to all selected participants. Funding covers the full cost of the training, one night of accommodation for the participant and a registered carer if needed, and meals during training hours.
Accessibility and inclusion are central to the programme’s design, ensuring that advocates from different backgrounds can participate fully.
How to apply
Applications are now open for the 2026 edition. You can find full details and submit your application via the Open Academy website: Click here.
The flyer for the training is also available for download: Click here.