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Information about Prader-Willi Syndrome

Prader-Willi syndrome (PWS) is a complex neurobehavioural genetic disorder resulting from an abnormality of chromosome 15.  It is a rare condition, occurring in one out of every 15,000 births and affecting an estimated 1500 – 2000 people in the UK.  PWS occurs in males and females and in all races. Definitive diagnosis is now based on genetic testing.

To learn more, watch our ‘What is PWS?’ animation below.

Our Medical Alerts guide below was written by medical specialists in PWS and is designed to support those living with PWS, their families and carers and medical professionals. It outlines the key medical alerts to be aware of and is a crucial companion:

  • For families and support workers supporting people daily with PWS to recognise symptoms and refer to at medical appointments
  • For medical and healthcare professionals to understand why and how symptoms are presenting and act quickly in a routine or emergency situation.

“Holland House is a fantastic place that saved my daughter’s life.  It is well organised, kind and gives residents love and stability.”

Relative of supported individual – September 2017