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…This is why children with PWS appear to be in a ‘blind rage” during the tantrum; they are literally behaving in survival mode, acting without thinking. In PWS it takes a while for the brain to “reboot.” After they recover, they may act as if nothing has happened (brain reboot), and they may or may not remember what has occurred. A tantrum is a learning experience for the caregiver. The keys to successful behavioral…
…wrote the book “The Smile Thief”, published in 2017, which is the testimony of a family with a special child. She has been married for over 40 years to Mauricio Sánchez with whom she has four children; the youngest, Carlos Iván, has Prader-Willi syndrome. She has been President of the Asociación Colombiana Síndrome de Prader-Willi since 2019. María was part of the organising committee of international symposiums on PWS in Colombia in 2019 and 2021….
…– Trier and the Catholic University of Eichstätt-Ingolstadt for research on the subject of Prader-Willi syndrome. IPWSO Board: Board member from June 2011 till November 2019. Professional Providers & Caregivers’ Advisory Board: Board member. Organizer of the International PPCB Conferences 2018 in Munich, 2012 in Wildbad Kreuth, 2009 and 2008 in Herne, Germany together with Dr. Norbert Hödebeck-Stuntebeck and the Board members of PPCB. Managing director in the non-profit company Prader-Willi-Syndrom Institut Deutschland gGmbH (PWS-ID)….
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….
Member, Clinical and Scientific Advisory Board Jorgelina Stegmann, MD, MBA, is President of the Fundacion SPINE, a centre for specialist treatment and research into Rare Diseases, specifically in PWS, in Argentina and she is Co-Founder of RDCom (Rare Diseases Community)….
Member of the Advisory Group on “Research on specialist services for people with PWS”. Mark Lister is a Board Certified Assistant Behaviour Analyst who has 30 years of experience working with individuals with Prader-Willi syndrome, designing and managing, both residential and behaviour management programs. Mark was one of the founders of the Arc of Alachua County’s PWS residential program in Florida, USA. Currently the Arc is serving 65 individuals with PWS and is the only…
…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….
First treatment for hyperphagia in Prader-Willi syndrome brings hope to individuals with PWS and their families around the world. The United States Food and Drug Administration (US FDA) has approved VYKAT™ XR, a significant milestone as the first approved treatment for hyperphagia in Prader-Willi syndrome (PWS). This breakthrough follows the US FDA’s approval of Growth Hormone Treatment (GHT) nearly 25 years ago. The approval comes after an extensive US FDA evaluation, supported by data from…
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.