Welcome to the United Kingdom section of the Syngap Global Network website!
We are dedicated to bringing together families from around the world affected by a syngap1 mutation, but the goal of this page is for Uk familes to connect with each other, to create a supportive community in order to share experiences, resources and knowledge specific to the UK.
Syngap1 is a gene that encodes a protein in the brain, which is essential for memory and learning. A mutation on the gene leads to intellectual disability, autism and epilepsy in the child.
Syngap Global Network aims to connect families and build communities within their immeadiate location and nationally, as well as internationally. We are here to support each other and aim to identify and welcome new syngap children and their families as they are diagnosed.
We are able to provide contact information of families living with a person with a syngap mutation, and links to our national and international facebook groups and pages.
The syngap community has already had some very memorable meetings for families to connect in person! Sometimes we meet at a suitable venue with our children. And sometimes we meet up just to enjoy being with people who know exactly what having a child with syngap entails!
If your family member has been diagnosed with a syngap mutation, we would love to join our community! The UK currently has an estimated 45 people diagnosed, with many many more still yet to be diagnosed.
Please contact us at SYNGAP.GN.UK@gmail.com