Patient-based Registry

EURAS Kick-off Meeting

EURAS Kick-off Meeting, 18 – 20 July 2023, Erlangen, Germany

From 18 – 20 July, EURAS held a very successful kick-off meeting in Erlangen, Germany. For the first time, EURAS partners met face-to-face, after the EURAS project had started in June 2023.

EURAS aims to develop effective treatments for neurodevelopmental RASopathies. 16 partners from 8 countries made it their goal to gain a deeper understanding of disease mechanisms, hereby improving diagnoses and treatments. The initial idea came from committed parents of affected children, who teamed up in the German patient organisation Syngap Elternhilfe e. V. This is what makes EURAS special: Patients and their experiences are at the core of EURAS. Their perspectives and needs will be integrated throughout the project.

At the first meeting day, focus lay on getting to know each other and introducing structures of the EURAS project. All 16 partners demonstrated the expertise they bring to the project. Work Package leaders described the current status of work, their goals to be achieved and possible challenges.

This proved to be the starting point for vivid discussions and constructive feedback from all partners. It was motivating and inspiring to see so many dedicated experts from different fields coming together to collaborate, to discuss, and to exchange ideas. Already at the first meeting day, much input was gained from the suggestions partners provided.

The second day was dedicated to General Assembly decisions. Discussions continued on topics that were identified as particularly relevant.

Partners also got the opportunity to explore some aspects of the history of Erlangen, which is famous for its beer cellars and elaborate tunnel systems. To explore Erlangen that way was an unexpectedly enlightening experience: not only did we learn some lessons about history, but also about life in general, as the tour guide turned out to be a philosopher!

From the kick-off meeting, partners gained new ideas and even more motivation. One day later, they already established new collaborations bridging the gap between basic research and clinical practice.

Very much looking forward to the progress we will achieve within the next four years and the fruitful collaborations within the team and beyond!