Reporting to our members
Find out how our Board of Trustees reports back to our members.
How does the Board report to members?
The Board of IPWSO is elected by our members at each General Assembly (these take place every three years). Board members are elected to serve for three-year periods. The Board sets the direction of the organisation and oversees our finances and governance.
The Board of IPWSO reports back to our members using a mixture of formal and informal methods.
The Board produces an annual report. A separate version of this report, which is approved by the auditors, is sent to the Charity Commission in England and Wales. The Board also reports back to representatives of our member associations at the IPWSO General Assembly every three years at our international conference.
We have IPWSO delegates, who are representatives of our member associations. They help us to disseminate our information as well as to feedback information and priorities from their associations.
We also communicate with our members through newsletters, social media (links at the bottom of the page), ECHOs and our website.
If you have any questions about how we work or how you can get further involved in our work then we are always delighted to hear from you.
Our People
Many people make up the work of IPWSO and the vast majority of our work is completed by volunteers.
Annual Reports
Find out about our work and impact. We publish an annual report each March with information and reports from the previous year.
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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.