31/08/2025
🌍 International Epilepsy Congress 2025, Lisbon – Empowering Patients in Research: First insights from the PATRE SYNGAP1 Registry
🙏 A big thank you to all participating families and patients!
Today we had the privilege to present our work at the International Epilepsy Congress in Lisbon:
🖼️ Poster #363 – Empowering Patients in Research: First insights from 444 participants in the PATRE SYNGAP1 Registry
🌍 With already 444 participants worldwide, the PATRE Registry provides a unique view on development, epilepsy, behavior, and comorbidities in SYNGAP1.
📊 We are especially proud of the systematic HPO-based data collection – one of the most detailed phenotypic landscapes of SYNGAP1 to date.
✨ Our work was selected by the ILAE Young Epilepsy Section (YES) for the Poster Tour – a great recognition of the joint effort of families, clinicians, and researchers.
A big thank you to:
- All participating families & patients ❤️
- The SYNGAP1 patient organizations worldwide SYNGAP Elternhilfe e.V. Syngap España Syngap Global Network (SGN) Syngap1 Argentina SynGAP Research Fund (SRF) for SYNGAP1-Related Disorders for their tireless support
- Our partners in the EURAS Project Horizon Europe consortium
📌 Poster & impressions from the congress attached!
EURAS League Against Epilepsy
More details: www.patre.info
