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…Board largely consists of parents, complemented by a network of medical experts and advisers. We know what PWS is like and the impact it has on a family. If you want to find out more information about any aspect of the condition, please contact us and use our ‘Ask an Expert’ facility. Your questions can be answered by professionals in our network, or by parents who know what it’s like. < Back to Our Blogs…
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 2024 Dec 5]. In: Adam MP, Mirzaa GM, Pagon RA,…
…Originally from Colombia, I now reside in South Florida with my husband and our two children. My personal background is System Engineer – Computer Science. As a mother of a 13-year-old daughter with Prader-Willi syndrome (PWS), I have cultivated compassion, resilience, empowerment, and the courage to navigate the unique challenges PWS brings. From the moment my daughter was born, I developed a deep passion for helping other families affected by PWS, sharing my experiences to…
…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…
…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…
…Committees reporting to the Chief Executive Officer Grants Committee Chair: Lynn Garrick International Conference Committee Chair: To be confirmed Online Events Committee Chair: Karin Clarke People with PWS Committee Chair: Svetlana Labun Publication and Communication Committee Chair: François Besnier Research and Clinical Trials Committee Chair: Tony Holland < Back to About Us International Community IPWSO was established so that PWS associations, families, clinicians and caregivers around the world could exchange information and support and have…
…behalf of IPWSO to speak to families at a conference organised there. She presented on nutrition, development, neurology and behaviour and general medical issues. She also conducted several 30-minute sessions one-to-one with family groups, sharing her knowledge and experience. Vietnam – October 2019: Georgina Loughnan (Board member), Constanze Lämmer (paediatrician and nutritionist) and Norbert Hödebeck-Stuntebeck (Chair of our Professional Providers and Caregivers Board) visited Hanoi, Vietnam, to present a Prader-Willi syndrome programme at the request…
…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…
…volunteers, staff, members, donors and supporters. It organises our work under four pillars. We will prioritise Building Communities by supporting the growth of new and existing PWS associations and uniting the global PWS community for the benefit of all its members. We will champion Equal Opportunities by striving for a world where people with PWS have equal opportunities to their peers, and all people with PWS, and their families, have access to current, evidence-based knowledge,…
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.