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Schinzel-Giedion Syndrome Foundation

Schinzel-Giedion Syndrome Foundation

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

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  • About SGS
    • What is SGS
    • What causes SGS
    • Classical vs. Atypical SGS
    • Features of SGS
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Family Stories

In this photo: Avery

Family Stories

We are so grateful to our amazing families for sharing these heartfelt, honest and inspirational stories with the world.

In this photo: Avery

Family Stories

We are so grateful to our amazing families for sharing these heartfelt, honest and inspirational stories with the world.

Carla’s Story

Aaron’s Story

Ava’s Story

Stephanie’s Story

Emma’s Story

Sadie’s Story

Avery Jo’s Story

Scarlet’s Story

Join the Schinzel-Giedion Syndrome Registry

We are inviting you to join the first-ever global patient registry for Schinzel-Giedion Syndrome. The goal of the registry is to combine medical data from patients with SGS so that researchers can discover patterns and clues that may help doctors better understand and treat SGS in the future.

SGS Registry

Newsletter Signup

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

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