Providing support to families caring for a child with Schinzel-Giedion Syndrome

The Schinzel-Giedion Syndrome Foundation was created to bring hope to affected families worldwide. We are a a non-profit charity run by volunteers. Our key aim is to raise money to help fund projects and research that will help our children to live healthier, happier lives.

In this photo: Avery

Million Dollar Bike Ride

The SGS Foundation is partnering with the SETBP1 Society for the first time to participate in the 2024 Million Dollar Bike Ride sponsored by the University of Pennsylvania’s Orphan Disease Center. Our combined team is called SETBP1Strong and the event will take place in Philadelphia, USA on Saturday, June 8th.

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.

Rare Disease Day

We created this video to celebrate Rare Disease Day which is celebrated in February every year. 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

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
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.

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.
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