In recent years, the scientific community has increasingly recognized the importance of involving patients, their families, and patients’ associations in the projects we develop, especially in highly translational research where patients are at the core of our work. Engaging them allows us to understand their concerns and needs, ensuring that our projects or clinical protocols are better aligned with their real-life requirements, ultimately improving the success of scientific outcomes. Similarly, it is also essential to communicate and disseminate scientific results to them in a clear and simple way, for example, through workshops or conferences specifically designed for patients. These events help people feel more involved in projects and allow them to learn about their progress in detail, making science more transparent, accessible, and understandable at all levels of society.

For these reasons, in our BETTER project, communicating and disseminating the project and its results at all levels is one of the main pillars. In line with this, Dr. Gema García (leader of Use Case 2, focused on Inherited Retinal Dystrophies) was invited to participate in the International Retina Murcia Congress held in October 2024. The Retina Murcia Congress is organized by the patient association Retina Murcia (RETIMUR), began in 2013 as regional sessions and evolved into an international congress in 2018. This event brings together patients, researchers, and students to address advancements in the diagnosis, treatment, and research of visual diseases. Gema participated in a roundtable discussion to emphasize the importance of European funding to advance research on rare diseases, particularly retinal diseases, and to explain the main objectives of the BETTER project to the participants.

We are getting back into work after a well deserved holiday.

In 2024 we got the BETTER Project off to a great start, both on the technical side and the communication side.

• Technical progress: The PADME software has been deployed among partners and the next step is to have it deployed at the clinical sites. A lot of work has also gone into data FAIRication and data handling, in order to work across institutions and have the same data structure regarding the same research topic.
• Webinars: We have hosted our first webinars to explore the subjects of federated learning and researching rare diseases. Events & Conferences: We have been to several events and conferences, which has lead us to new insights and exciting collaborations.

With such a great year in 2024, our goals for 2025 is first and foremost to continue what we have successfully started, and then we keep on keeping on!

• We have plenty of exciting techical developments planned for 2025: Our Use Case workshop at Terrassa in November was a great success and allowed us to plan our next technical steps in-person. In 2025 we are focusing on practical results moving the project from theory into practice!
• And we also have more dissemination and communications activities in the pipe line: Webinars, academic papers, work shops, and events.

It’s both productive and rewarding to work together with so many different people across country borders and expertises! We are appreciative for the EU HORIZON projects for giving us this opportunity!

All in all, 2024 was a great and productive year, and we believe that 2025 will be even better!