Who We Are

The Schinzel-Giedion Syndrome Foundation is a registered UK charity (Registered Charity Number 1186327) established in 2019 by an international group of parents of children with Schinzel-Giedion Syndrome (SGS). Our foundation has been created to represent children with SGS and their families living all around the world.

Our Mission

Our mission is to provide support to families caring for a child with Schinzel-Giedion Syndrome, to raise awareness of SGS and to facilitate and support medical research that will help us find better treatments to improve the quality and length of life of children living with SGS.

Our Vision

Our vision is for a future when all children with Schinzel-Giedion Syndrome will receive a rapid genetic diagnosis and have access to effective medical and gene therapies to ensure they live longer, healthier and happier lives.