We are pleased to announce the launch of the Global Schaaf-Yang Syndrome (SYS) Registry!
The Global SYS Registry creates a platform for patients around the world to strengthen their voices and share information about SYS, a disease that causes poor muscle tone (hypotonia), contractures of joints, feeding and respiratory problems, gastrointestinal issues, orthopedic problems, seizures, endocrine issues, impaired vision, and varying degrees of intellectual disability. SYS currently has no cure. Designed with the input of scientists and patients, this global resource will provide data for researchers to use to advance drug development and treatment options to help improve SYS patient care. Join now and let your data tell your story!
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