The Schinzel-Giedion Syndrome Foundation is a registered charity (charity number 1186327) established in 2019 by an international group of parents of children with Schinzel-Giedion Syndrome (SGS). Our charity is run by parent volunteers and supported by a knowledgeable and well-respected team of scientists and medical doctors on our Advisory Board. Our mission is to provide support to families around the world who are caring for children with Schinzel-Giedion Syndrome, to raise awareness 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 this rare, life-limiting genetic condition.