Guidance on PWS-Inclusive Meetings
“With us” not “About us”: Inclusive Meetings for people with PWS
The guidance in this document has been developed by the IPWSO People with PWS Committee, and the people with PWS we work with. The committee is a group of international experts supporting people with PWS to advocate for themselves to ensure their voice is heard in their local communities, National Associations and IPWSO. We work alongside people with PWS to determine and establish the best platforms to express their own needs and wishes, and to exchange ideas on their interests and personal experience, quality of life and wellbeing with each other, with PWS professionals, and with IPWSO.
Get in touch
If at any point you’d like to discuss your plans for meetings with people with PWS, or to ask advice, our People with PWS Committee are happy to support you. Email office@ipwso.org with your request and we’ll be happy to put you in touch with the committee.
Example resources
We’ve gathered examples of resources for meetings with people with PWS on our website: Agendas, Anonymised meeting minutes, Example questions…and more! If you have resources from your own group meetings that you would like to share, please send them to office@ipwso.org.
Videos presented by people with PWS
Presentations from Our Way of Life Australia (OWLA) group members at the 6th Asia Pacific PWS Conference in August 2024.
Presentations from the 6th International Prader-Willi Syndrome Caregivers’ Conference in May 2024
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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.