Prader-Willi syndrome (PWS) is a lifelong genetic disorder caused by loss of expression of paternally inherited genes in chromosome region 15q11-q13. The International Prader-Willi Syndrome Organisation (IPWSO) Overview and Evaluation for Infants Aged 0–3 Years provides guidance for early recognition, assessment, and care.

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The Global Newborn Society (GNS) works in close collaboration with the International Prader-Willi Syndrome Organisation (IPWSO) to advance early recognition and care of newborns and infants with Prader-Willi syndrome.

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Newborns with PWS commonly present with severe hypotonia, decreased movement, weak crying, poor suck, and feeding difficulties, often requiring assisted feeding. These findings should prompt consideration of PWS and appropriate molecular genetic testing.

Early management focuses on safe feeding, nutrition and growth, endocrine and respiratory health, sleep, and development. Growth hormone therapy is important for many children. Physical, occupational, feeding, and speech-related therapies can address the effects of hypotonia on swallowing, mobility, communication, and development.

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Early diagnosis should lead to coordinated, anticipatory care. Multidisciplinary support and proactive surveillance during the first three years can identify emerging concerns and provide a stronger foundation for long-term health and development. Every Baby Counts.®