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
SYS Families Unite at FPWR's Annual Family Conference
Join us for a two-day conference combining education, networking, and community-building.
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.
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!
JOIN THE SCHAAF-YANG COMMUNITY
Our Schaaf-Yang Families are the key to identifying a cure. We can't do it without you.