11 September 2025 Research and Clinical Trials Update Meeting
The third IPWSO Research and Clinical Trials Update Meeting took place on September 11, 2025. Our thanks to the presenters and to everyone who attended. The presentations are shared below.
The presentation by Soleno was exclusive to the live meeting and was not recorded. You can read the related publication “The burden of illness in Prader-Willi syndrome: a systematic literature review”, authored by the presenter, at this link.
In accordance with our Policy and Code of Practice, IPWSO does not promote individual trials or the use of specific medications.
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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.
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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.
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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 genetic screening.



