Being told that your child has a diagnosis of Schinzel-Giedion Syndrome (SGS) can feel very overwhelming and frightening, and you will have lots of questions about what this will mean for your child and your family. To help support newly diagnosed families during this difficult and emotional time, we have created an information leaflet with key facts about SGS, including what causes SGS, how is it diagnosed, what are the symptoms of SGS and details of where you can find out more information. Please click below to download this leaflet.

Connecting with other SGS families is an important source of emotional support and a great way to share experiences and ask questions. Join our private SGS Family Facebook Group here https://www.facebook.com/groups/46580394354

If you have any other questions, please contact us at The Schinzel-Giedion Syndrome Foundation contact@sgsfoundation.org  We’d love to hear from you!