Caring for Rare 2024 conference
01/10/24 10:18 Filed in: Datrix
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.
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.
