Family Meetings
The Famcare Board of IPWSO presents online information sessions via ZOOM on topics relevant to families of people with PWS. As a community, we invite discussion, offer hope and support, and seek to empower families to manage challenges.
The last Family Meeting, on Progressing from childhood to adulthood took place on Saturday, 23 November, 2024.
View the video recordings of the presentations below.
Details of the next meeting will be shared on this page as soon as it is announced.
Periods of transition can be some of the most stressful and difficult times for people with PWS. Planning for change is important to help reduce possible reactive, fearful and oppositional behaviour that can develop as a result of change. Supporting someone with PWS through major life changes takes time, patience and encouragement as well as guidance and direction.
At this meeting we discussed challenges within the family, school, work, group homes, social settings and more. Video presentations from the meetings are available below.
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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.