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Vanja Holm’s contribution to our knowledge of PWS

Jan 8, 2021

…Dr. Vanja Holm’s work in the field of PWS… On November 16, 2020 Prader-Willi syndrome lost Dr. Vanja Holm, one of its most important and caring specialist physicians, one who devoted much of her career to medical care, research and education about people with PWS. As a pediatrician who specialized in developmental disorders (conditions that included slower development and intellectual disability) at the University of Washington’s specialized center for developmental disability, Dr. Holm established and…

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PWS and self-determination

Nov 4, 2022

…me to manage myself. I understood better the importance of physical activity for example. Listen to the person, involve him in decisions that are made for his future and encourage him to rely on outside people or professionals. Now I’m going to go into topics to pass a message to politicians. Thank you Mr. Piveteau (M. Piveteau is a high official who introduced the PWF National Day) for staying in the room. First of all…

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Inaugurada la primera residencia especializada para personas con Síndrome de Prader-Willi en España / Opening of the first group home designed for people with Prader-Willi syndrome in Spain

Jun 14, 2022

…that the two specialists who work in our Association have gained after many years of working with the syndrome. The development of the home has also been possible thanks to the work of the people who make up the Spanish Prader-Willi Syndrome Association (AESPW) and others who have collaborated with it, contributing money and work to make this dream come true. Looking to the future, we hope to be able to count on the financial…

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Ramadan, fasting and PWS

May 4, 2021

…was seven years old and managed to perform full day fasting at the age of nine years. We also heard the example of Afiq who is 17 and also successfully fasts. At the end of Ramadan we hold the celebration of Eid. We need to prepare and bring along food that is suitable for the diet of people with PWS and make the surrounding people understand about PWS. So that is another challenge! ———————————————————— Of…

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Laura Keane

Oct 23, 2020

…St. Gabriel’s school, a centre in Limerick which provides services for children with physical disabilities. She is currently Co-Chair of IPWSO’s Professional Providers and Caregivers Board. Laura is equally passionate about developing specialist residential and community support services for people with PWS and recently led the development of a new service in the South East of Ireland, comprising of six apartments supporting people with PWS to live their best possible lives within the local community….

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Clinical and Scientific Advisory Board

Jan 10, 2023

…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 PWS? Translated Guides Find support in my country…

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Media Guide

Sep 15, 2020

…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 PWS? Translated Guides Find support in my country…

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Kate’s story

Jan 26, 2021

…able to go to schools and share my experiences with the students to raise awareness of Prader-Willi syndrome and the damage that bullying can cause. A lot of people who have Prader-Willi syndrome do not feel comfortable talking about it, but I want to share my experiences so people can understand. People should never judge a book by its cover, but instead get to know the person on the inside. More information about Aruma Services….

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IPWSO Support for the People of Ukraine

May 11, 2022

IPWSO Support for the People of Ukraine The continuing suffering of the people of Ukraine is a cause of great sadness to IPWSO. We have watched from afar as the horror of this war unfolded and are conscious of the tremendous injustice, hardship, and anxiety that people with PWS and their families from Ukraine are experiencing. We stand in solidarity with the people of Ukraine. We have been heartened by the many communications we have…

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Quick links

three adults and a child smiling

Information for
Families

Find useful guides, research and information to help families manage PWS.

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One man one lady at conference

Information for Medical Professionals

The latest medical and scientific research and information, plus guides into common medical issues affecting people with PWS.

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young child in a yellow dinosaur jumper

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. 

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