EURAS at the 2nd SYNGAP1 Scientific Congress
The Vice President of the German Syngap Elternhilfe e. V., Marcos Mengual Hinojosa, had the privilege to participate in the 2nd Hispanic Scientific Online Congress for Syngap1 organized by the Syngap Research Fund LATAM (SRF) on 23 September2023, at the invitation of Victoria Arteaga from SRF.
During this event, Marcos, who is Spanish, had the opportunity to present the EURAS project to the Latin American Syngap community, as well as to interested clinicians and researchers. Being funded by the EU the EURAS project also warmly invites all Syngap1 and Rasopathy patients outside of Europe to participate in the patient registry.
This patient registry (named PATRAS) is being developed in multiple languages. This online platform provides the opportunity for patients and their caregivers to play a central role in basic research. Their reports on disease manifestations and treatment efficiency helps researchers to better understand disease mechanisms. New biomarkers will be identified on the basis of questionnaires that the bioinformatics team at the University of Málaga (Spain) analyses. Additionally, a Natural History Study will be developed, which is intended to pave the way for future clinical trials.
The presentation (in Spanish) is available on YouTube.