European SYNGAP1 Registry

Welcome to our European SYNGAP1 Registry.

We are building our SYNGAP1 registry with the help of the European SYNGAP1 patient organizations.
We have made a start with the German speaking organizations SYNGAP Elterhilfe and Leon & Friends. Currently we offer participation in the following languages: English, German, Italian, Dutch, French and Spanish.

To register as a patient, please click here.

For more information as a self-help organization or clinician, write to us at:


June 28, 2020:

We are proud to present the first results of our anonymous drug survey on SYNGAP1 in collaboration with SYNGAP Elterhilfe and Leon & Friends:

Our data were presented in an EPICare webinar by our team member Celina von Stülpnagel. You can watch it here (after registration) and download the slides here.