Patient-based Registry


Syngap1 Norge is a discrete Facebook group for parents and caregivers of patients diagnosed with Syngap1 living in Norway. Syngap1 is a rare genetic disorder characterised among others by intellectual disability and epilepsy. This group provides a private and secure space to share challenges and experiences with Syngap1. At present approximately 15 patients have been registered in Norway with Syngap1 with an age range from 1 to 36 years. For further daily mental support Facebook group members of Syngap1 Norge can be invited to a discrete snapchat group to share private moments and/or to discuss daily challenges.

Main contacts

Photo of Susanne Hadland
Susanne Hadland