Leader of use case 1, a medical doctor with a PhD degree in human genetics. The head of the genetic medicine department at the San Joan de Déu Children's Hospital in Barcelona, Spain. Francesc Palau Martínez is another vital part of the BETTER Project, where his specialisation and experience is indispensable!

Watch his interview to hear more about Francesc’s role, his motivation and expectations for the BETTER project.

Leader of use case 2, a biologist, a genetician, and a researcher in the Health Research Institute from La Fe in Valencia working in rare diseases. Gema García García is an important part of the BETTER Project and brings her specialised knowledge and experience to the table.

Watch her interview to hear more about Gema’s role, her motivation and expectations for the BETTER project.

We have been around the subject of motivation in an earlier blog post. Today, we turn our attention to the expectations of the BETTER Project. Expected impacts was one of the questions in a series of interviews from the project meeting in Stresa, Italy, back in April.

In the interviews we hear some of the people behind BETTER talk about their expected impacts or outcomes of the project. Depending on their individual field of expertise, they have different expectations. Some focus on the development of technology, while others focus on how the project can make a positive impact for the patients they work with.

One thing they all agree on: they all expect that the BETTER Project will have a positive impact on the future. Watch the full interview answers in the video to hear their answers.

From September 12th to 14th, 2024, in Belgrade Serbia, both IMGGE and Datrix participated in the Caring for Rare 2024 conference, a unique event on rare diseases that brought together stakeholders from across Central and Eastern Europe.

During the conference, the BETTER team contributed to the session titled "Empowering Rare Diseases through Data", which convened experts and advocates working to leverage data and technology to advance rare disease research and care. This session highlighted the potential for international collaboration and emphasized the critical need for patient involvement in data sharing. The discussion focused on the transformative role of data in advancing the understanding of molecular pathways, improving diagnosis, and driving innovative treatments for rare diseases. We also had the opportunity to discuss the European Health Data Space (EHDS) and present BETTER and its mission, which aims to create secure, privacy-preserving infrastructures for health data sharing.

Additionally, the conference provided a valuable opportunity to visit the IMGGE facilities in Belgrade. As a governmental institute, IMGGE is dedicated to acquiring new knowledge in molecular genetics, biomedicine, and biotechnology, with the goal of improving quality of life. Within the BETTER project, IMGGE plays a crucial role in Use Case 1, contributing their strong expertise in genomics and rare disease modeling. During the visit, we further discussed BETTER's long-term vision and explored opportunities to strengthen synergies in innovation projects.