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 years, most recently as IPWSO Vice President from 2016-2019.
Shelly has held roles in the UK charity sector encompassing relationship management, fundraising, project delivery and online and in-person events and training management. In health charities she has worked to support people with Parkinson’s and people with Arthritis. Shelly joined IPWSO at the start of 2021 and is responsible for managing IPWSO Project ECHO® programs as well as other online and in-person workshops, meetings and conferences.
Communication & Membership Manager
Agnes worked at Cambridge University, UK, alongside Tony Holland, and joined IPWSO initially to organise the 2019 IPWSO Conference in Cuba. She has now joined the IPWSO staff as Communication & Membership Manager. Her background is in communications and campaigns in the health and disability sectors.
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 joined IPWSO as Project and Operations Manager to develop our Project ECHO® programs and our 11th International Conference which was held in Limerick from 6 – 10 July 2022.
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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.