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Adult Life

In this section we link to various guides which may help when you are supporting an adult with PWS.

Guide to: Meeting with professionals
Guide to: Prader-Willi syndrome and Duty of Care
When someone with Prader-Willi syndrome is in trouble with the law
Guide to: The importance of planned, purposeful days
Guide to: Too hot, Too cold: Abnormal temperature sensation
Guide to: Preparing for the future: When parents die

A Guide to Me

This 30 page document is in 10 chapters and makes up a “personal history” of the person with PWS. Invaluable for caregivers, support workers, teachers and service providers. The document has been adapted from the original by Kate Beaver (PWSA USA) for IPWSO use. It is a generic document and can be changed and altered according to individual needs.

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International Community

IPWSO was established so that PWS associations, families, clinicians and caregivers around the world could exchange information and support and have a united global voice under one umbrella.

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Information for
Families

Find useful guides, research and information to help families manage PWS.

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Information for Medical Professionals

The latest medical and scientific research and information, plus guides into common medical issues affecting people with PWS.

Information for
Professional Caregivers

Sharing international knowledge among professional service providers throughout the world.

What is PWS?

Translated Guides

Find support in my country