Connect with Other Families
Sharing experiences with other parents and carers of children with Schinzel-Giedion Syndrome can be a source of great comfort and support.
My child has been diagnosed with SGS. How do I connect with other families of children with Schinzel-Giedion Syndrome (SGS)?
Being told that your child has Schinzel-Giedion Syndrome can bring up lots of frightening and confusing emotions. However, sharing these emotions with other parents and carers of children with SGS, many of whom are further along in this journey, can be a source of great comfort and support.
Schinzel-Giedion Syndrome is rare, but you are not alone. Get in touch today and come and join our family!
We have a Private Facebook group for families of children with SGS where you can connect with other families and share your experiences and feelings in a private safe space, surrounded by others who understand what you are going through.
Join the Schinzel-Giedion Syndrome Registry
We are inviting you to join the first-ever global patient registry for Schinzel-Giedion Syndrome (SGS). The goal of the registry is to combine medical data from patients with SGS so that researchers can discover patterns and clues that may help doctors better understand and treat SGS in the future.
