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 Pilot Grant Program
The Orphan Disease Center (ODC) at the University of Pennsylvania is pleased to announce the 2024 Million Dollar Bike Ride Pilot Grant Program is now open and offering up to 42 different research grant opportunities focusing on 34 different rare diseases.
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
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.
