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.

Bringing Hope to Affected Families Worldwide

My child has been diagnosed with SGS. How do I connect with other families of children with 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! 


Is the Schinzel-Giedion Syndrome Foundation a registered charity?

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.


Will this website also include information for medical professionals?

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.


How can I support the Schinzel-Giedion Syndrome Foundation?

There are lots of ways that you can support our foundation and help us raise awareness about Schinzel-Giedion Syndrome. You can follow us on Twitter and like our Facebook page, you can volunteer to help us fundraise or you can make a donation. Thank you so much for you support!

Get In Touch

If you are a Family affected by Schinzel-Giedion Syndrome or a Medical Professional caring for a child with this condition and would like to find out more, please get in touch. We'd love to hear from you.

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