…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……
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Early results from IPWSO’s PWS and COVID-19 survey
…new information was published about risk factors for serious illness we became more concerned – obesity, diabetes mellitus, and respiratory disorders all being common in people with PWS and all identified as being associated with more severe illness in the general population following COVID-19 infection. We report below on the very early findings based on the first 16 responses (15 were fully completed). The small amount of responses received so far may be a positive…
Celebrating the lives of people with PWS this Rare Disease Day
…Rare Diseases International (RDI) is bringing together patient organisations, policy-makers, UN Permanent Missions and other stakeholders to launch a global campaign for equity and social justice for PLWRD. RDI asks us to be part of this important milestone for the rare disease community. The common challenges affecting people with rare diseases must be tackled internationally as well as ensuring that specific challenges are also highlighted. IPWSO is an active part of the rare disease community…
Board of Trustees
…People 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 medical issues affecting people with PWS. Information for Professional Caregivers Sharing international knowledge among…
Exercise for people with Prader-Willi Syndrome
…Back to Physical Health, Diet and Exercise 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 medical issues affecting people with PWS. Information for…
Coping with Change
…we like will be open again next week but it is closed today so we can’t go there today.” The last piece of information given in this example is the fact that the shop is closed and the fact that they will still get a nice coffee, comes first. Give a visual example of the problem or the change. For example if you were planning to move a cupboard into a room and it did…
Promoting Positive Behaviour
…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…
Clinical Research
…details will be passed on to the company. The outcome of this will then be a matter between the company and the contact. IPWSO may from time to time write commentaries for its website on trials that are either in progress or which have been completed and results published and peer reviewed. Such commentaries will be prepared by a suitably qualified and informed person on behalf of IPWSO and will be approved by the CSAB…
Prader-Willi syndrome and Duty of Care
…can easily misunderstand or misconstrue complicated conversation. People working with them need to mean everything they say! Humour and joking must be kept in simple terms until they are well known to those working with them. Explain to others that people with PWS get stuck when trying to complete multi-stepped tasks. This is why they appear to be slow or stubborn, when asked to hurry to complete and activity/action. Ask for multi-stepped tasks to be…
Quick links
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.
What is 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.