Our Mission

To provide support for families caring for a child with Schinzel-Giedion Syndrome (SGS), to raise awareness of SGS and to facilitate and support medical research.

In this photo: Avery

Our Mission

Our mission is to provide support for families caring for a child with SGS, to raise awareness of Schinzel-Giedion Syndrome (SGS) 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 devastating rare genetic disorder.

Did you miss the first ever SGS Virtual Family Conference on August 12-14th 2022?

Catch up on all the recorded sessions here!

Watch Now

Rare Disease Day

We have created a video to celebrate Rare Disease Day on February 28th 2021. The video features many of our inspirational children and reminds us all that there is happiness, fun and hope even in the darkest times.
Please share our video and consider donating to the SGS Foundation this Rare Disease Day. We are raising funds to support research into SGS and the symptoms which can seriously impact the quality and length of life of children living with this life-limiting rare disease.

A Wonderful Life for Scarlet

This incredible film was accepted to Disorder: The Rare Disease Film Festival which will take place in New York, November 2020. It features Scarlet, a little girl with Schinzel-Giedion Syndrome. Thank you to her family for sharing this honest and personal glimpse into their daily lives.

“For us, the Schinzel-Giedion Syndrome Foundation means Hope.
Hope that we have a voice, Hope that the world will know our families and Hope that people are invested in our children’s futures.
The Foundation bridges the gap between families, researchers and medical professionals, for the benefit of children with Schinzel-Giedion Syndrome around the world.”

Jennifer Wagner, Trustee and mother to Scarlet, USA

Schinzel-Giedion Syndrome
Patient Voice Publication

The Schinzel-Giedion Syndrome Foundation has partnered with Prime Global to create this Patient Voice Publication to tell our story, highlighting what challenges children with SGS face and the everyday support they need. Please download and share this resource and help us spread awareness.

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Find Out More About Us

Our Amazing Children

Meet some of our incredible children with SGS.

About SGS

What is SGS, diagnosis and symptoms.

Support Us

Find out the different ways in which you can support us.

Newsletter Signup

Sign-up to receive family stories and updates on our research projects and fundraising campaigns.

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