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Co-opted Trustee Karin Clarke is the Chairperson of the Prader-Willi Syndrome Support Group of South Africa. She graduated with a Bachelor’s degree in economics and psychology from the University of Cape Town (UCT). She worked in Marketing Research, at Kantar TNS until her daughter with PWS was 2 years old. In 2011 when her daughter was four years old and was finally diagnosed with PWS she joined the PWS Association of South Africa. In 2015…
Chartered Psychologist, Cambridge Intellectual and Developmental Disabilities Research Group Aspects of Prader-Willi Syndrome (PWS), especially cognition and behaviour and how this relates to the genetic abnormalities….
Treasurer and Trustee I have had over forty years working, in varying capacities, in the provision of welfare services to children and their families, particularly in statutory child protection and for people with disabilities. Whilst trained as a Psychologist, I have managed a large district for the Department of Community Services (DoCS) at Liverpool. I subsequently became the state of NSW’s Director for Adoption and Permanent Care. I was the CEO of Interaction for over…
…Mental Health in Rare Genetic Disorders. He is author of the guide “Mental Health in Prader-Willi syndrome” which was published in cooperation with the Prader-Willi Syndrome Association Germany. He has been a member of the DFG-funded clinical scientist programme PRSCTIS at Hannover Medical School since 2019. His research focuses on mental health in neurodevelopmental disorders with a special interest in psychosis. He has a strong interest in the genetic and epigenetic mechanisms underlying mental disorders….
Psychologist Diakonische Stifung Wittekindshof Germany Norbert is a Psychologist, Psychotherapist and a Supervisor, who resides in Bad Oeynhausen, Germany, where he currently serves as Project manager Prader-Willi-Syndrome and Projektmanager Adipositas (Obesity) for Diakonische Stiftung Wittekindshof (a Lutherian foundation in the north west of Germany, in Northrhein-Westfalia). He received his PhD in 2012 at the University of Eichstätt by a study about the competence of people with Prader-Willi-Syndrome in change of perspective (empathy). Since 1996 he has…
Professor of Pediatrics, University of Toulouse She directs the Reference Centre for Prader-Willi syndrome in France and is the Chair of the Scientific Council of Prader-Willi France. Her research includes oxytocin in PWS….
…postdoctoral experience working in the UK on the molecular genetics of PWS. Upon returning home to Kenya, she found that there were no documented cases of confirmed PWS cases in Kenya or even in the greater East African region. To that end she decided to approach Kenyan pediatricians with a questionnaire on the diagnosis of a PWS baby and the management therein. Since then her work and contacts in the PWS community have further developed….
Trustee Tünde Liplin is a mother of 2 children. Her firstborn child, a son, Levente who lives with PWS was born in 2011, and she has a daughter, Panna, who was born in 2015. Her professional background is as a financial analyst. After she graduated, Tünde worked hard to attain her role as lead Financial Analyst for 17 years in a multinational company. But as a mother who cares for a child with special needs,…
Parent, Philanthropist, fundraiser, and conference adviser Joan has served as an adviser and committee member of PWSA USA and IPWSO. Currently Joan is the Parent Representative from USA to IPWSO….
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.