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…ignorance of the topic at hand. People with PWS need time to comprehend a question and then cognitively organise an appropriate response. Their cognitive organisation (executive ability) is slow. They do better with simple, direct questions, not multi-stepped questions or more than one at the one time. Avoid comments that could have ambiguous meanings or those that require specific interpretation. It is better to “suggest” what is needed and to offer choice, where possible, rather…

Diagnosis of Prader-Willi syndrome When to test for Prader-Willi syndrome If the clinical signs and symptoms of Prader-Willi syndrome are present then it is recommended to conduct a DNA methylation test. For the most up to date information on the clinical features of PWS and how to diagnose the syndrome, please refer to the following article. Driscoll DJ, Miller JL, Cassidy SB. Prader-Willi Syndrome. [Updated 2023 Mar 9]. In: Adam MP, Mirzaa GM, Pagon RA,…

…to enforce this has rarely been needed. (ii) the ambience of the work place is a ‘happy’ one, where supervisors and supported workers appear to enjoy their work, taking pride in what they do and what they achieve. (iii) the hours of work have been negotiable, not only for my son. He works 6 hour days, with other workers employed for shorter or longer days, as required. This is accepted by all workers. (iv) the…

Research Papers Listed below along with their abstracts are selected papers on Prader-Willi syndrome newly appearing in PubMed in peer reviewed academic journals. All papers are initially listed without their summaries to give a quick overview, then for most of the papers the summaries are included later in the document. They are divided into specific categories: General PWS and families; Genetics, and brain imaging; Endocrine including Growth Hormone; Sensory and physical; Behaviour; Cognition and mental…

…has a healthy weight for height (BMI) the percentage fat will be greater than in the non-affected person. This means it is much easier for them to gain fat and harder to “burn fat” through daily energy expenditure. The more muscle a person has the greater their potential for more “fat-burning” or energy expenditure, as muscle tissue burns energy (calories) first. When people are on restricted energy intake menus, as needed by people with PWS…

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…testing for PWS to families in countries where this is not available locally. IPWSO has provided this service continuously since 2003 and to date, has funded the testing of over 500 samples received from 47 countries. Advice Service We are here for parents, families, associations, caregivers and professionals, and we can answer your questions. Just ask. Project ECHO® Project ECHO® is a key enabler to IPWSO’s strategy to grow and strengthen the PWS community. Support…

…PWS 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…