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.
Information for
Families
Find useful guides, research and information to help families manage PWS.
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?
Prader-Willi syndrome is a complex genetic condition. Various studies have shown that between 1 in 15,000 to 25,000 children are born with Prader-Willi syndrome and it affects all races and both sexes equally.
Free Diagnosis
If you suspect your patient has Prader-Willi syndrome, based on the clinical signs and symptoms, but are unable to access testing in your country, then you may be able to access free testing.
Find support in my country
We have contacts in many countries and regions around the world.