As I write this, it's 26 days until the The IPWSO conference begins in Limerick, Ireland!! Have you registered? Do you have any questions? Don't hesitate to get in touch with Gary or Emma. We're looking forward to seeing you in Limerick!
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?
Given the huge success of running this event virtually and ensuring that everyone can take part, no matter where you are in the world... it's back for 2022! This year the event will take place on the last weekend of May to give everyone you know a chance to take part. We at PWS5k HQ … Continue reading PWS 5K 2022
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
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
On Friday 27th May 2022, we are asking everyone to wear orange to help raise awareness of Prader-Willi Syndrome. Below are some materials that might be useful for PWS Awareness Day! Here is a poster to share in your school, club or workplace. Poster for PWS Awareness Day 2022Download In 2021, Henry (age 8) who … Continue reading Orange Day for PWS Awareness Day 2022
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
An interdisciplinary approach to the treatment, education and support of children and adults with PWS. This is an interactive, educational meeting supporting competency development and knowledge sharing. Who should attend? All those interested in the holistic treatment and support of people living with PWS: clinical and educational psychologists, doctors, mental health professionals, nurses, social workers, … Continue reading Conference Posters for the Interdisciplinary day
Hello! My name is Kamila Lipiec, I am a postgraduate student at the University of Birmingham, UK. My supervisor is Dr. Kate Woodcock, a trustee of IPWSO and lecturer at Birmingham University. Together with IPWSO, we are carrying out a study ‘Listening to people with PWS across the world’. The study aims to hear from … Continue reading Research: Listening to people with PWS across the world
From The Autism and Rare Neurodevelopment Team at Trinity College Dublin: To mark International Rare Disease Day this year, we have worked on a summary of some of the most exciting research developments to emerge from PWS research. Click here to read more on our website: PWS Research News (trinityautismresearch.com) We are very fortunate to work … Continue reading A Summary of Exciting PWS Research Developments