Research and Clinical Trials Update Meetings
Our next annual Research and Clinical Trials Update Meeting will be held Thursday 10 September, 2026.
5pm UK time (London), via Zoom. Meetings are 90 minutes.
Click here to see your local time for the meeting.
Click RSVP below to add the meeting to your calendar and confirm your attendance.
Across the globe, scientists and clinical researchers are working to develop effective treatments and interventions for PWS. As our understanding of this complex genetic condition continues to grow, clinical trials remain essential in transforming research into real-world solutions, helping evaluate the safety, efficacy, and potential impact of new therapies.
This online event brings together researchers, clinicians, industry partners, member associations, families and people with PWS from around the world to hear the latest developments in PWS research and clinical development.
This year’s programme will include presentations from:
- Rare Disease International (RDI)
- Palobiofarma
- ConSynance
- Neurocrine Biosciences
- Rhythm Biosciences
- Harmony Biosciences
The meeting will also include opportunities for attendees to ask questions and engage directly with presenters.
Whether you’re a family member, caregiver, healthcare professional, researcher or person with PWS, this is an opportunity to stay informed about the latest developments and be part of the global conversation shaping the future of PWS treatment.
Programme
- Welcome and housekeeping
- RDI: The global rare disease landscape
- Palobiofarma: PBF-999 in PWS
- ConSynance: CSTI-500 to treat hyperphagia and behavioural symptoms in PWS
- Neurocrine Biosciences: VYKAT™ XR to treat hyperphagia in PWS
- Harmony Biosciences: Pitolisant for excessive daytime sleepiness in PWS
- Rhythm Pharmaceuticals: Prader-Willi Syndrome and the MC4R Pathway
- Panel discussion and audience Q&A
- Closing remarks
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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 Genetic Screening
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.
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We have contacts in many countries and regions around the world.