Prader-Willi syndrome (PWS) is a rare, complex genetic disorder caused by loss of expression of paternally inherited genes in chromosome region 15q11-q13. It affects multiple aspects of health and development, including muscle tone, feeding, growth, endocrine function, metabolism, neurodevelopment, and behavior.

 

The International Prader-Willi Syndrome Organisation (IPWSO) is a recognized global organization dedicated to improving the health, care, and quality of life of people with PWS and supporting their families worldwide. The Global Newborn Society has begun working closely with IPWSO to advance early recognition, education, and appropriate care for newborns and infants with PWS. The attached PDF presents the 2026 IPWSO guidelines for evalution and care of patients aged 0–3 years.

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PWS can be particularly difficult to recognize during the newborn period. Affected infants may have marked hypotonia, decreased spontaneous movement, a weak cry, poor suck, and difficulty feeding, but these findings are not specific to this condition. The diagnosis can get delayed unless healthcare professionals caring for these infants recognize the possibility of PWS and request genetic testing.

 

Early management should focus on safe feeding, nutrition, endocrine and respiratory health, and development. Multidisciplinary support and proactive surveillance can provide a stronger foundation for long-term health and development. Every Baby Counts.®