If you want a cure for Schaaf-Yang syndrome, you're in the right place.

Welcome to the Schaaf-Yang Community

The fierce love we feel for our children drives our mission: to eliminate the challenges of Schaaf-Yang syndrome. We are uniquely focused on research and developing new therapies, finding treatments, and ultimately cures.

The Foundation for Prader-Willi Research is the only organization in the world supporting SYS research. We will not rest until we have a cure. Join the Schaaf-Yang community to be part of the progress.

Meet Our Fighters

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SYS Families Unite at FPWR's Annual Family Conference

Join us for a two-day conference combining education, networking, and community-building.

JOIN US

What is Schaaf-Yang Syndrome?

Schaaf-Yang syndrome (SYS) is a genetic disorder caused by a disruption of the MAGEL2 gene on chromosome 15. Symptoms include joint contractures, feeding difficulties, developmental delays, intellectual disabilities, sleep disturbances, and more.

The disrupted gene causing Schaaf-Yang syndrome is also missing in another, more common genetic disorder, Prader-Willi syndrome (PWS). PWS is caused when MAGEL2 and several additional genes on chromosome 15 are missing or inactivated.

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Recently Diagnosed? We're Here to Help.

The first weeks and months after a diagnosis can be one of the hardest things you'll ever face. As parents of children with SYS, we know what it's like, that is why we wrote First Steps: A Parent's Guide to SYS. This guide was written for parents, by parents and contains important information to help guide you through the beginning of this journey!

DOWNLOAD FIRST STEPS