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Register now for the IPWSO conference 2022

We are delighted to invite families, caregivers, reseachers and practitioners to register for the IPWSO 11th international conference, being held in Ireland in 2022.

Providing free PWS diagnosis to families who need it

We provide free diagnostic testing to those who cannot access it in their own countries.

Sharing knowledge and proving support

We are committed to supporting all people with PWS and their families, whatever their needs, and wherever they live.

Find out how Project ECHO® is helping to share knowledge and build capacity worldwide and how you can join in.

Lady and small child


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.

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Information for

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.

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Information for
Professional Caregivers

Sharing international knowledge among professional service providers throughout the world.

What is PWS?

Free Diagnosis

Find support in my country

three ladies at an IPWSO conference

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.

three ladies at an IPWSO conference

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.

IPWSO Conference 2022

Join us at the 11th International Prader-Willi Syndrome Organisation Conference!
6-10 July 2022 at the University of Limerick, Ireland

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.

Take our IPWSO survey on how COVID-19 infection affects people with PWS.

The survey is to be completed by the family or carer of a person with PWS who has had COVID-19 infection. Early results can be found here.