The Schinzel-Giedion Syndrome Foundation is a UK-based patient organisation that represents the international Schinzel-Giedion Syndrome (SGS) community.
Our mission is to create medical and scientific partnerships to facilitate awareness, research and knowledge-sharing and to provide communal support for families of children with Schinzel-Giedion Syndrome.
Through our foundation’s website, we aim to provide valuable information resources for affected families and their medical professionals, we will share our family stories and we will share updates on donation and volunteering opportunities.
Our children are amazing and above all we look forward to sharing their beauty and inspiration with the world.
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!
Yes, we are a registered UK charity (Registered Charity Number 1186327). However, this does not mean that we can only support affected families here in the UK. Our foundation has been created to represent children with Schinzel-Giedion Syndrome and their families world-wide.
Yes, this website will include information specifically written for medical professionals caring for children with Schinzel-Giedion Syndrome. This will include information about the health issues that typically affect children with Schinzel-Giedion Syndrome, as well as information about therapies and equipment that can be beneficial to children living with this condition.