IPWSO Summit Meetings provide an international online forum at which key issues of relevance to people with PWS and their families, and our international community, will be discussed. People living with PWS and their families, clinicians, researchers, professional caregivers, PWS association leaders, pharmaceutical company representatives, and others with a personal or professional interest in PWS are invited to participate.
In order to preserve the time during the workshop for small group discussions, participants will receive in advance short materials prepared for the meetings by subject experts.
Summit on Newborn screening for Prader-Willi Syndrome and other chromosome 15 abnormalities
Sunday April 3, 2022 1:00pm GMT (London, UK time)
Newborn Bloodspot Screening (NBS) refers to testing carried out on infants shortly after birth for specific disorders and health conditions. Although NBS programs are in place in many countries, to our knowledge there is no country in which universal NBS for PWS is offered.
Much work has been undertaken in relation to the development of a cost-effective and accurate means of NBS for PWS. This session will discuss recent developments and ongoing research as well as practical and ethical issues concerning NBS for PWS.
The meeting will last 90 minutes and be held via Zoom. There is no charge to participate, although advance registration is required.
IPWSO strives to make collaboration in our community as accessible as possible. If you would like to take part but feel you may experience difficulty with language or any other aspect of communicating with the group, we encourage the support of interpreters, family members or caregivers. Please let us know if you would like to plan any special arrangements and we’ll be delighted to support this.
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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 Medical Professionals
The latest medical and scientific research and information, plus guides into common medical issues affecting people with PWS.