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…issue need to be aware of the characteristics of PWS. People with PWS also have the right to health and social care provided by an informed professional. Given that people with PWS make up a very small percentage of the population, PWS-informed professionals are not common. This information covers important facts about PWS and tips to enhance the communication between the person with PWS and the professional with whom they are meeting. It highlights why…
…treatments, services and support. We will support Research for all by disseminating research findings in ways that make current knowledge accessible to all and fostering research that reflects the diverse needs of people with PWS and their families around the world. We will aim to attract adequate and sustainable Funding to Meet Needs to enable us to better support people with PWS and their families, in particular those most in need. The commitments in this…
…who they are, if we are to assist them in living a healthy life as a part of society, we must also respect PWS and the commonalities seen in people with PWS. People with PWS think differently, respond differently and react differently to other people. Learning and knowing as much about PWS as is possible, will make life easier for you and your person with PWS. Learn as much as you can about PWS. Tell…
…local leaders to better support people in areas of unmet need. Feedback from the workshop showed that people value an opportunity to discuss issues of common concern in an international and multidisciplinary setting. In response, IPWSO is planning a series of “Summit Meetings” on topics on broad interest to the global PWS community. More information will be made available on our website and social media channels in early 2022. A need to provide more support…
…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. PWSA | USA Medical Alerts Medical Alerts in your language Consensus Documents…
…Prader-Willi syndrome Personal Care for People with Prader-Willi syndrome < Back to Information for Families International Community IPWSO was established so that 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…
…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. PWSA | USA Medical Alerts Medical Alerts in your language Consensus Documents…
…in Africa and would like to get more involved in this work then do get in contact with us. There are also various resources that may be of interest: PWS information in Arabic, French and other languages: https://ipwso.org/pws-information/translated-guides/ PWS information in English: https://ipwso.org/pws-information/ IPWSO’s free diagnosis service: https://ipwso.org/how-we-can-help/free-diagnosis/ PWS Support Group, South Africa run whatsapp groups for families and would be happy to add people from other African countries: http://www.praderwilli.org.za/ IPWSO’s advice line: office@ipwso.org…
…laboratory but your doctor should be able to access this test for you. Where possible a discussion with a clinical geneticist is recommended to help parents make sense of the findings and to direct them to information about PWS (such as the IPWSO website) and also to a paediatric clinic for further support and guidance. If the test is not available in your country then please direct your doctor to access IPWSO’s free diagnosis service….
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.