What is Prader-Willi Syndrome?

What is Prader-Willi Syndrome? Prader-Willi syndrome (PWS) is a rare, complex genetic disorder that affects both males and females from birth and throughout their lives. It causes low muscle tone with consequent motor developmental delays, a mild to moderate learning difficulty, and emotional and social immaturity, which can lead to challenging behaviours. During childhood, an … Continue reading What is Prader-Willi Syndrome?

Research Opportunity for Individuals with PWS

The University of Surrey is inviting parents and carers of children or young people with PWS to take part in a research project.  This project forms part of the Cerebra Network for Neurodevelopmental Disorders’ multi-site research collaboration across University of Birmingham, Aston University, University of Surrey, and University of Warwick.  The research focuses on understanding … Continue reading Research Opportunity for Individuals with PWS

Research Opportunity: The Neurodevelopment Lab at TCD

February 2022: To date 31 families have completed the first stage of our PWS research study.  A big thank you to all those families.  The information that you are sharing with us about your PWS family members is invaluable to our research.  We have recently finished analysing the data from the PWS caregivers and healthcare professionals … Continue reading Research Opportunity: The Neurodevelopment Lab at TCD

IMPORTANT UPDATE TO CONFERENCE REFUND SCHEME  for Families in Ireland

IMPORTANT UPDATE TO CONFERENCE REFUND SCHEME - PLEASE READ!  April 2022 Dear Families,  Having reviewed the increases in cost of living as well as seeking feedback from families, PWSAI have agreed to increase the amount of the refund scheme being offered for the International Conference.  We understand this is an important once in a lifetime … Continue reading IMPORTANT UPDATE TO CONFERENCE REFUND SCHEME  for Families in Ireland