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.
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...
RDI and COVID-19
Rare Diseases International (RDI) have today published their statement on COVID-19 and the impact on the lives of people with rare disorders and the response that is needed from Governments. IPWSO, as a member of RDI, recognises that people with rare disorders,...
Prader-Willi research
Our Clinical and Scientific Advisory Board has published a collated list of all PWS research papers published from July to September 2020.
Prader-Willi research
Our Clinical and Scientific Advisory Board has published a collated list of all PWS research papers published from April to June 2020.
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.