Patient-based Registry

SYNGAP Elternhilfe e. V.

Syngap Elternhilfe e. V. is the German patient organization for families of children and adults with SYNGAP1 Syndrome. It was established as a patient support group in early 2016. Since 2021, it is a fully registered non-profit organization with 64 members and more than 110 known patients in Germany. It is led by a group of dedicated parents of affected children. Their work focusses on three main topics: awareness, patient support, and research.

Their main goals are:

  • Finding more patients by improving diagnostics and educating parents of undiagnosed patients and by increasing awareness for SYNGAP1.
  • Improving quality of life for affected families by providing information, consultation and exchange of experiences
  • Advancing research with own projects to increase knowledge and to find better treatment by cooperating with clinicians and researchers.

To reach these goals, the organization connects with other patient organizations within the SYNGAP Global Network and beyond, and reaches out to researchers in Europe and around the world.

Main contacts

Photo of Verena Schmeder
Verena Schmeder

Team Leader of Syngap Elternhilfe e.V.

Photo of Marcos Mengual Hinojosa
Marcos Mengual Hinojosa

Deputy Team Leader of Syngap Elternhilfe e.V.