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Empowering advocates, advancing knowledge: Highlights from the 2025 EURORDIS Open Academy
The 2025 edition of the EURORDIS Open Academy Schools took place from the 2- to 4 of June in Barcelona, , bringing together 77 patient advocates and young researchers from 27 countries, along with 19 expert faculty members, for an inspiring and intensive training in Medicines Research & Development (MRD) and Scientific Innovation & Translational Research (SITR).
This was also the first edition of the Open Academy Schools to take place under the ERDERA framework, marking a new chapter of collaboration and support for rare disease education and advocacy across Europe and beyond.
Exclusive visits to pioneering medical spaces
This year, participants visited two leading institutions: the Hospital Sant Joan de Déu (SJD) and the Centre Nacional d’Anàlisi Genòmica (CNAG).
At HSJD, we explored three key spaces:
- CORTEX, a cutting-edge control centre that monitors the real-time flow of patients across the hospital. This state-of-the-art system enables healthcare professionals to manage beds and resources efficiently, preventing saturation and ensuring optimal care.
- The NICU (Neonatal Intensive Care Unit), where participants observed advanced care practices supporting the most vulnerable patients.
- The Families Space, a newly conceived area designed to offer emotional and psychological support to patients’ families and loved ones. While the hospital’s core mission is to treat illness, this project reflects a growing commitment to holistic care, recognising the vital role of compassion in healing.
Participants also had the opportunity to visit the CNAG, the largest genomic analysis centre in Spain and a recognised global reference in the field. The visit included an in-depth tour of the sequencing unit and the data processing centre, offering participants a rare behind-the-scenes look at how large-scale genomic data is generated, managed, and interpreted to advance research and improve diagnostics for rare diseases.
New topics, powerful stories
The 2025 curriculum was enriched with new sessions addressing evolving needs and opportunities in the rare disease community. These included:
- Compassionate Use and Pharmacovigilance by EURORDIS
- Real World Data in Regulatory Processes by World Duchenne Organization and the Duchenne Data Foundation
- AI Tools in Diagnosis by Foundation29
- Patient Engagement Strategies by EURORDIS
- Gene/Advanced Therapies, presented by AFM Téléthon
A standout moment of the week was an emotional session where five participants shared their stories – heartfelt accounts that brought the group together through a shared spirit of resilience, advocacy, and hope.
Introducing the Open Academy Alumni Mentoring Programme
In an exclusive preview, we proudly introduced our brand-new Alumni Mentoring Programme, set to launch in September. This initiative aims to provide ongoing support, connection, and growth opportunities for Open Academy alumni, further strengthening their role as rare disease advocates and leaders.
Connections that last
As always, the week was as much about people as it was about content. Participants formed new connections, exchanged ideas, and laid the foundation for future collaborations. These connections are vital in sustaining an informed and empowered rare disease community.
I really enjoyed the choice and variety of topics and especially the interactive sessions (both in the e-learning/Webinars, as well as in the training week). Thank you for providing the space and structure to gain all that new knowledge, confidence and connections to so many lovely people.
This year, we welcomed five participants from Canada, sponsored by the Canadian Institutes of Health Research (CIHR). Their presence added valuable perspectives from the Canadian rare disease landscape. In addition, three fellow advocates from Kenya, Taiwan, and Chile joined the Schools thanks to the Rare Disease International Fellowships, reflecting our continued commitment to fostering global representation and inclusivity within the rare disease community.
Looking ahead
We extend our heartfelt thanks to the incredible participants and faculty whose contributions made the 2025 Schools a big success. The Open Academy continues to be a beacon of education, connection, and empowerment for rare disease advocates at national, European, and global levels.
Capture the highlights
Relive the week’s most memorable moments by visiting our Flickr album – a collection of photos that reflect the spirit, energy, and inspiration of this year’s Schools.
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