Sign up to our newsletter
Contact Us
We are looking for people interested in joining the IPWSO Board from July 2022. Could you get involved and help guide and support our vital work? Trustees play a crucial role in the work of IPWSO. We are lucky to work with a fantastic group of people on our current Board and are now looking for exceptional candidates to fill the Trustee positions that will become available on the board from July 2022 onwards. Trustees…
…El programa contempla las siguientes fechas: Conferencia Clínica y Científica Compartir investigación y establecer estándares de buenas prácticas 7 & 8 de julio 2022 Revisa la lista de expositores. Conferencia para Profesionales Cuidadores y Proveedores Compartir modelos de buenas prácticas y planeamiento centrado en individuos 7 & 8 de julio 2022 Esta es una oportunidad única para que los cuidadores profesionales y proveedores de distintas partes del mundo se puedan reunir, comentar y discutir las…
…world could exchange information and support and have a united global voice under one umbrella. Information for Families Find useful guides, research and information to help families manage PWS. Information for Medical Professionals The latest medical and scientific research and information, plus guides into common medical issues affecting people with PWS. Information for Professional Caregivers Sharing international knowledge among professional service providers throughout the world. What is PWS? Translated Guides Find support in my country…
Member of the Advisory Group on “Research on specialist services for people with PWS”. Brian Hughes is Professor of Psychology at the National University of Ireland, Galway. He is a specialist in stress psychophysiology, health psychology, and research methods. He has conducted extensive research into the ways human cardiovascular responses habituate during repeated or sustained stress exposure, helping to explain how some people are resilient to the long-term health effects of chronic stress. He has…
…held in Munich, Germany, in August this year. I am the mother of Tomas Benedek (16yr) who has PWS. We live in Slovakia and are member of the Slovak PWS association (www.pwsyndrom.sk). Our association has been an IPWSO member for several years. I have represented our association in IPWSO for about 10 years. I also attended several conferences organized by IPWSO, the last was the International Caregivers´ Conference held in Munich this August. For me…
The Georgian Ministry of Health has made the decision to provide free growth hormone to people with PWS….
Our Clinical and Scientific Advisory Board has published a collated list of all PWS research papers published from April to June 2020….
…associations, families, clinicians and caregivers around the world could exchange information and support and have a united global voice under one umbrella. Information for Families Find useful guides, research and information to help families manage PWS. Information for Medical Professionals The latest medical and scientific research and information, plus guides into common medical issues affecting people with PWS. Information for Professional Caregivers Sharing international knowledge among professional service providers throughout the world. What is PWS?…
Many of you will know Georgina Loughnan – she has been involved with IPWSO for many years both on the Board and as part of Famcare. It has just been announced that she has been awarded the Order of Australia Medal (OAM) in the Queen’s Birthday Honours for her work with people with PWS. Many many congratulations – for anyone who knows her it goes without saying that this honour is so very well deserved….
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.