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Information for Families

Learning that your child has Prader-Willi syndrome (PWS) will probably be a huge shock. Being given a label that you’ve probably never heard of before can turn your world upside down in an instant. The first thing to remember is that this is still your beautiful child who needs you now, more than ever. Remember too that you are not alone. IPWSO and the global PWS family are here to help and support you all the way.

We have information, practical how-to guides and downloadable resources to help support and enable you to prepare for dealing with and living with PWS throughout the critical stages of development.
Take a closer look by clicking on the topics below. If you require any additional advice please contact us.

Woman in colourful top with child holding a mobile phone

New Parents

What to expect, achieving milestones and how to help your child to develop.

blonde-haired child on a chestnut pony


Support and advice for living with a brother or sister with PWS.

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Education and Transition

Guidelines for parents of school-age children with PWS.

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Diet and Nutrition

How to approach food management successfully.

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Behaviour and Mental Health

Behaviours common with PWS, what to expect and how to understand them.

child in pale pink vest and shorts sat on gym swing

Physical Health and Exercise

Understand key health indicators in a person with PWS.

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Sexual Development

Information about sex education, sexual development and fertility.

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Adult Life

Find out more about supporting an adult with PWS.

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Family Care Board (Famcare)

Our Famcare Board has written numerous information guides and provides answers and support to many families. Find out who sits on this Board.

What is PWS?

Translated Guides

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