Eurordis - Rare Disease Europe

Celebrating the 2024 EURORDIS Open Academy Schools on Medicines Research and Development, and Scientific Innovation and Translational Research 

Barcelona, 21 June 2024

The EURORDIS Open Academy Schools 2024 took place two weeks ago, where we welcomed 70+ advocates from 23 countries along with over 25 faculty to Barcelona for the intensive in-person training of our Medicines Research and Development School and Scientific Innovation & Translational Research School. 

Exploring Cutting-Edge Facilities 

Participants had the unique opportunity to visit some of the leading scientific facilities in Barcelona. These included Vall d’Hebron Institut de Recerca, the Centre Nacional d’Anàlisi Genòmica (CNAG), and the Sant Joan de Déu Hospital. These visits provided first–hand insight into the advanced research and innovative practices being employed in the field of rare diseases.

In-Depth Learning and Knowledge Sharing 

The curriculum for each school was meticulously designed to cover a wide array of crucial topics.: 

Throughout the SITR School, participants gained comprehensive knowledge about the transformative role of artificial intelligence in diagnosis, the critical journey from bench to bedside in translational research, and the ethical considerations surrounding genome editing. They delved into the significance of patient involvement in research, diagnosis, and care pathways, while also exploring the role of animal research and the latest advancements in therapeutic strategies. 

 Meanwhile, those attending the MRD School focused on designing patient-centric clinical development programs and understanding the essential functions of ethics committees. They learned effective strategies for engaging with the European Medicines Agency (EMA) and gained insights into the process of being involved in scientific advice and protocol assistance. Furthermore, they explored the crucial role of patient involvement in health technology assessment (HTA) processes. 

Building Networks and Fostering Connections 

Networking was a key component of the EURORDIS Open Academy Schools. Various opportunities were provided for participants to meet, connect, and learn from each other. These interactions fostered a collaborative environment, enabling the exchange of ideas and experiences, which is vital for driving progress in the rare disease community. 

“I’ve learned much useful information, connected with people, and spoken freely – I’d love to do it again next year! Above and beyond experience!” 2024 School Participant

Gratitude and Acknowledgment 

Finally, a  mention to the incredible participants. Their dedication, effort, and trust in the EURORDIS Open Academy are truly inspiring. The impact of our alumni is profound, as they go on to utilise the knowledge and skills acquired during the training to advocate for their specific rare disease communities and the broader rare disease community. Their contributions are shaping the future of rare disease research and patient advocacy. 

The 2024 EURORDIS Open Academy Schools have once again proven to be a beacon of knowledge, collaboration, and inspiration. We look forward to witnessing the continued achievements of our alumni and the lasting impact of their advocacy efforts. 

“Engaging with the other participants in a very tangible way. Also, to hear and learn about their various ‘roadmaps’ and stories. Very humbling and inspiring. And of course, the actual learnings. I really feel I have learnt a lot which I will be able to apply in my patient advocacy work.” 2024 School Participant

Capturing Moments: A Week in Photos 

To relive the vibrant atmosphere and cherished moments of the week, we invite you to view our Flickr album. The album captures the essence of the training, the dynamic interactions, and the inspiring visits to cutting-edge facilities. View the Flickr album here.