How we can help
With your help we can work to ensure that every community around the world has access to free diagnosis, helpful information and local support. We are also working to translate much of our information into other languages and our international conferences also serve to bring people together and advance knowledge and a sense of global community.
Free Diagnosis
One of the most important parts of our work is providing free diagnostic testing for PWS to families in countries where this is not available locally. IPWSO has provided this service continuously since 2003 and to date, has funded the testing of over 500 samples received from 47 countries.
Advice Service
We are here for parents, families, associations, caregivers and professionals, and we can answer your questions. Just ask.
Project ECHO®
Project ECHO® is a key enabler to IPWSO’s strategy to grow and strengthen the PWS community.
Support for Conferences and Workshops
Organising conferences and workshops in your country can be a great way to bring people together to share information.
Individual Grants
We are able to provide grants to support travel to conferences and funding for other items required to progress the knowledge of PWS in your country.
International Advocacy
We engage with international organisations to advocate on behalf of people with Prader-Willi syndrome at a global level.
Research
We conduct research and also support and commission others to take part in research to benefit people with PWS.
Educational Outreach
We attend medical conferences to bring information about PWS straight to the professionals who are most likely to meet and support people with PWS through the course of their work.
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.