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Just over a week ago I started hearing that the schools in Ireland might be closed because of the Coronavirus. I was still very surprised when my teacher told me that my school would be closing that day for the following two weeks. Since then I have been doing some schoolwork at home as well as some special projects. I also play piano every day. I had a piano exam two days before the schools…
Chair, Famcare Board Educational Head of Department responsible for the Educational Management of 100 youngsters from 14-20 years. Also responsible for the formation of the Austrian PWS Association and chairperson for 10 years. Verena was an auditor for IPWSO before joining the board. She has a daughter with PWS living in the Regens Wagner Institution in Absberg /Bavaria/Germany. Verena was an IPWSO Trustee from 2016-2022….
Assistant Professor of Pediatrics Johns Hopkins School of Medicine, Baltimore, USA…
Director of Medical Genetics Assistant Director of Pediatric Endocrinolgy, Winthrop University Hospital, Mineola, NY U.S.A….
Executive Program Consultant Root Connections Consultative Services LLC Oconomowoc, WI, USA Jackie has worked directly with children and adults, who have been dually diagnosed, since 1985. She has extensive training, experience, and education in the areas of behaviour/crisis management, program/staff development, and residential supports. She has worked exclusively with individuals with Prader-Willi syndrome since 1996, providing educational training, behavioural support, guidance and consultation nationwide. With over thirty years of field experience, she now enjoys her…
Vice-Chair, Clinical and Scientific Advisory Board Senior Consultant and Associate Professor, at the Department of Endocrinology, Metabolism and Diabetology, Karolinska University Hospital, Stockholm, Sweden….
Associated Professor and Head PEZZ Center for Pediatric Endocrinology Möhrlistrasse 69, CH-8006 Zürich, Switzerland…
Project and Operations Manager Nora is based in Northern Ireland and has spent over 20 years working in membership-based organisations supporting various functions including operational, secretariat, policy, public engagement and continuous professional development. For 15 years Nora was Manager of the Royal College of Psychiatrists in Northern Ireland and was responsible for delivering local, national and international academic conferences. Nora has joined IPWSO as Project and Operations Manager and will be helping to develop our…
Chief Executive Officer Marguerite is based in Ireland and has a doctorate in Social Science from University College Cork. Marguerite has held senior voluntary and paid positions in non-profit organisations in sectors including international development, patient support and advocacy, homelessness, and educational advocacy for more than 20 years. Marguerite’s first child was born in 2004 and diagnosed with PWS shortly after birth. Prior to becoming IPWSO CEO, Marguerite served on the IPWSO board for 6…
Find useful guides, research and information to help families manage PWS.
The latest medical and scientific research and information, plus guides into common medical issues affecting people with 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.