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.
Do you want to organise a PWS event in your country?
Applications are now welcome for funding for PWS Conference and Workshops! Thanks to the support of Friends of IPWSO (USA), the Conference and Workshops Committee of IPWSO is able to offer funding to individuals and groups who are interested in planning and hosting a...
New funding for small PWS projects 2024
We have launched a new round of funding for families and professionals to organise PWS projects in countries where they are needed most. IPWSO is offering microgrants for small projects to support the efforts of individuals and groups who are working to improve the...
Supporting PWS events and projects in 2023
IPWSO is delighted to announce we have awarded grants to support PWS events and projects across 11 countries in 2023. Congratulations to all the grant recipients! These are exciting initiatives, and we look forward to sharing more news as the events and projects...
IPWSO conference 2025
An update on plans for our 2025 conference Our members usually select our conference venue at our General Assembly, however we did not receive any bids to present at the conference last year. The General Assembly therefore agreed to reopen the process and asked for...
New funding for small PWS projects
We have launched a new round of funding for families and professionals to organise PWS projects in countries where they are needed most. IPWSO is offering microgrants for small projects to support the efforts of individuals and groups who are working to improve the...
Do you want to organise a PWS event in your country?
We have launched a new round of funding for families and professionals to organise PWS workshops in countries where events are needed most. Thanks to the support of Friends of IPWSO (USA), the Conference and Workshops Committee of IPWSO is able to offer funding to...
PWS and self-determination
Prader-Willi France held its 25th national day on 15th October 2022, gathering together more than 220 families and professionals. The theme was self determination under the title "What about my opinion?". Two children and two adults with PWS addressed the audience on...
New PWS resources available thanks to Global Genes
Thanks to Global Genes for this exciting translation project! The International Prader-Willi Syndrome Organisation (IPWSO) is a recipient of the 2022 Health Equity in RARE Patient Impact Grant sponsored by Global Genes. Thanks to this award, IPWSO's project entitled...
Webinar on the endocrinology of PWS, for professionals in Africa
We are hosting a webinar with ASPAE about endocrinology and Prader-Willi syndrome in Africa: at 5pm West Africa Time on Thursday 8th September 2022. Prader-Willi syndrome (PWS) is a complex and rare neurodevelopmental condition. Studies have shown that between 1 in...
IPWSO’s General Assembly 2022
The General Assembly is the decision-making body of IPWSO, where IPWSO members can elect the Trustees, influence future plans and hear reports from the past 3 years. The General Assembly of IPWSO was held at 5pm Irish Standard Time on Sunday 10th July 2022 at the...
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.