About IPWSO
Since 1991 IPWSO has supported national PWS associations, as well as people with PWS, their families and the professionals who work with them. Our vision is a world where people with PWS and their families receive the services and support they need to fulfil their potential and achieve their goals. We are working to achieve this goal by uniting the global PWS community to collectively find solutions to the challenges of the syndrome and to support and advocate for people with PWS and their families, PWS associations, and professionals who work with people with PWS.
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.
How we can help
IPWSO is committed to supporting all people with Prader-Willi syndrome and their families, whatever their needs, and wherever they live. Whether you are looking for answers to your questions, information about diagnosis or support to build expertise in your own country, you are in the right place.
Latest News
Find out the latest news from IPWSO and stories of interest from around the world. We are always interested to hear your news too, so do get in touch if you want to share a blog post or news of an event or project in your country.
How you can help us
Much of our work is carried out by volunteers and we rely on the generosity of our supporters to fund what we do. Whether you could donate your time, share your story or make a donation towards our work, we would love to hear from you.
Video resources about Prader-Willi syndrome
Learn more about the syndrome with our useful videos including presentations by international experts.
Translated Guides
IPWSO has had many articles translated. Most of these relate to family care of a person with PWS and some are medical articles. You are welcome to download and distribute these articles, but please quote IPWSO as the source.