News
Follow the latest news from around the world and the international PWS family.
Use our Media Guide for information about how to write and report about Prader-Willi syndrome.
Could your PWS association host the IPWSO conference in 2025?
Has your PWS Association thought about hosting an IPWSO conference? In the past these have been held in the Netherlands, Norway, Italy, USA, New Zealand, Romania, Taiwan, UK, Canada and most recently Cuba. Ireland will host in 2022, maybe you could host in 2025? The...
Could you help guide our work?
We are looking for people interested in joining the IPWSO Board from July 2022. Could you get involved and help guide and support our vital work? Trustees play a crucial role in the work of IPWSO. We are lucky to work with a fantastic group of people on our current...
Asia Pacific PWS conference – October 2021!
The PWS associations of Australia, New Zealand, Malaysia and Thailand have come together to present the 5th Asia Pacific Prader-Willi syndrome conference! The event will be hosted online from 29th to 31st October 2021. We are delighted to be involved in what promises...
PWSA USA conference goes online and open to all!
The PWSA USA's national convention is going online from 22nd to 26th June, 2021. Over the course of five days, attendees will share ideas and experiences while learning from leaders in the field of PWS. The virtual format makes it possible for more families than ever...
IPWSO calls for use of Growth Hormone treatment in adults
IPWSO argues that Growth Hormone treatment should be universally available not just to children but also to adults with PWS. Our Clinical and Scientific Advisory Board has written to the Editor of the Orphanet Journal of Rare Diseases calling for the use of Growth...
Semaglutide trial results
A study published in the New England Journal of Medicine has shown exciting results from trials of a drug called semaglutide on people with severe obesity. The trial showed that people lost an average of 15kg when receiving semaglutide compared with only 2.6kg in...
Prader-Willi research
Our Clinical and Scientific Advisory Board has published a collated list of all PWS research papers published from October to December 2020.
Addressing UHC through Rare Diseases
We attended the webinar "Addressing UHC through Rare Diseases" co-organised by Rare Diseases International and EURORDIS on 11th December 2020... The discussion included a lively exchange on the challenges and potential for Universal Health Coverage to support the rare...
We are recruiting!
The International Prader-Willi Syndrome Organisation is looking for a talented and motivated UK-based Project Manager to support its virtual training and meetings including the coordination and facilitation of a series of Project ECHO® telementoring initiatives...
Announcing IPWSO Project ECHO® Programmes – 2020/2021
IPWSO’s mission in collaborating with the Project ECHO® initiative is to unite the Prader-Willi syndrome (PWS) global community. We want to move knowledge and to reach underserved populations. Collectively, we believe, we can find solutions to the challenges of...
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 Genetic Screening
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 genetic screening.
Find support in my country
We have contacts in many countries and regions around the world.