Patient-based Registry

SYNGAP1 Switzerland

The Syngap1 Switzerland Organisation is a compassionate and tightly-knit organization founded by dedicated parents who share a common journey - caring for children with syngap1 rare disease. This organization brings together parents from across the country facing similar challenges and striving for a brighter future for their children. Our Mission: We are on a mission to create a stronger and more supportive community for families navigating the complexities of rare diseases. Our aim is to foster collaboration, knowledge sharing, and resource pooling to enhance the quality of life for affected children and their families. What We Do:

  • Supportive Community: We offer a safe and understanding community where parents can connect, share experiences, and provide emotional support to one another.
  • Resource Sharing: We facilitate the exchange of vital information, from the latest medical advancements to practical tips for daily life, ensuring families have access to the resources they need.
  • Advocacy: We advocate for the rights and needs of children with rare diseases, working closely with healthcare providers, researchers, and policymakers to improve access to treatments and support services.

Main contacts

Photo of Sebastien Laverriere
Sebastien Laverriere