Support Our Vital Research

There is no cure for Schinzel-Giedion Syndrome. But with your help, there is hope that our children born with this devastating condition will live longer, healthier and happier lives.

In this photo: Ophelia

How Your Donation Helps

Support Life-Changing Research for Schinzel-Giedion Syndrome

Schinzel-Giedion Syndrome (SGS) is a rare and complex genetic condition that affects many aspects of a child’s development and health — from brain function and seizures to lung, kidney, immune challenges and increased cancer risk.

Every family’s journey with SGS is deeply personal. Every child’s life matters.

At the SGS Foundation, we bring together families, scientists and clinicians worldwide to advance research that addresses the whole disease — not just one symptom.

Driving Comprehensive, Multisystem Research

Because SGS affects the whole child, it demands a comprehensive scientific response.

Your donation accelerates progress across:

🧠 Brain and neurological research, including seizure mechanisms and targeted therapies
🌬 Respiratory and immune health, reducing infection burden and vulnerability
🩺 Kidney and multi-system care, improving understanding and clinical management
🎗 Cancer biology and disease trajectory, strengthening surveillance and protection
🧬 Precision molecular therapies, designed to address SETBP1 dysfunction at its root cause

As an ultra-rare condition, SGS receives little institutional funding. Progress depends on focused, family-driven science.

A Message from the Heart

Researchers are tackling some of the hardest questions in rare disease biology. Clinicians are learning how best to care for complex, multi-system needs. Families are driving progress every day.

But none of these advances without support.

When you donate, you are not just giving money — you are giving:

Hope for understanding
Fuel for discovery
Momentum toward meaningful treatments

Every contribution strengthens the scientific momentum needed to change the future for children living with SGS.

Join the Journey

Help us accelerate multidisciplinary research that could transform lives.

Together, we can push science forward — toward understanding, toward care, toward possibility.

Donate Today

Direct Donation:

Bank Account:
Barclays Bank UK PLC, Leicester, LE87 2BB, UK

Account name:
The Schinzel-Giedion Syndrome Foundation

Account No:
73640035

Sort Code: 20-88-13

SWIFT: BUKBGB22

IBAN: GB62 BUKB 2088 1373 6400 35

Reference: Please quote your name/company

US Tax-Deductible Donations:

Are you a U.S. resident wanting to make a tax-deductible donation through our U.S. Fiscal Sponsor?

The Schinzel-Giedion Syndrome Foundation is fiscally sponsored through Rare Village Foundation, a 501(c)3 tax-exempt organization and your donation is tax-deductible within the guidelines of US law.

To claim a donation as a deduction on your US taxes, use the email donation receipt you will receive upon successful completion of your donation as your official record. Rare Village Foundation EIN: 83-4699994.

What is a Fiscal Sponsor?

A fiscal sponsor is a nonprofit organization that provides fiduciary oversight, financial management, and other administrative services to another charitable organization. The 501(c)(3) nonprofit status of the fiscal sponsor extends to the chosen charitable organization enabling smaller organizations without 501(c)(3) nonprofit status to receive grants and donations to fund both short-term and long-term projects. Please contact us to discuss fundraising opportunities.

Please contact us so we can acknowledge your donation or to discuss fundraising opportunities.

The Founders aim to cover the Foundations’ administrative expenses so that all donations can go towards supporting our important research projects.

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