Patient-based Registry

EURAS Patient Board Inaugural Meeting

Patient involvement is crucial for the EURAS consortium and the EURAS project, which was initiated by Syngap Elternhilfe e. V. It enriches the researchers' work and ensures that patients' needs are met throughout the project. Patient associations provide access to patient data, which is essential for research, but particularly challenging to collect for rare diseases.

The EURAS Patient Board facilitates collaboration between the consortium and RASopathies patient organizations across Europe. Board members aim to expand project outreach, gather patient feedback and translate consortium information into national languages.

During the EURAS project application phase, Syngap Elternhilfe e. V. contacted European patient organizations for Syngap1, CFC, Costello Syndrome and Noonan Syndrome. Additional organizations expressed their support upon funding approval, and the Patient Board members were nominated and approved during the EURAS Kick-off meeting in July 2023.

Verena Schmeder – our Patient Board Officer of EURAS and president of Syngap Elternhilfe e. V. – invited the patient representatives of the different associations to the Inaugural Patient Board Meeting, which took place on 22 August 2023. This event marked the beginning of a 4-year collaboration with the EURAS project. All patient representatives are highly motivated to support the EURAS project that aims to improve their childrens’ live.