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…poems, speeches, letters, and his own record of his son’s sayings and doings – a whole book’s worth of “Jacobisms”. The resulting book I Am Full is Jacob’s story. The excerpt from I Am Full below includes the text of a fundraising speech Jacob gave in Guelph, Ontario, two months before his death. He got a standing ovation for it, and brought the sold-out audience to laughter and to tears. My name is Jacob Zavitz….
Sexual Development Without sex hormone therapy, sexual maturity in PWS does not fully develop. The child with PWS will begin puberty, usually around the age of 10-12, but not complete it. Known as ‘precocious puberty’ there will be a development in body hair, some breast development in girls and a degree of penile development in boys. Menstruation, if it occurs at all, is often scanty and irregular – although some females do have regular periods,…
…Topics include Mental Health, Endocrinology, Nutrition and more. Caregivers’ ECHO® These videos are for Caregivers and Providers who are in contact with people with PWS in an all-day setting. They examine and analyse current methods, and discuss solutions for common challenges. SPW Latino América ECHO® Videos delivered in Spanish and managed by RedLASPW, the Latin American Network of Prader-Willi Syndrome, a network of professionals from healthcare, education, research and related fields. < Back to PWS…
…Diseases International (RDI). IPWSO is now a full member of RDI. So what were some of the main lessons from these meetings and how should IPWSO respond? First, there are many 1000’s of rare disorders and diseases each of which is very different from the other, and whilst every person with a rare disease is a unique person, there are things that people with rare diseases may share in common, as may their families, due to the rareness…
About Us We are an international non-profit membership organisation supporting national Prader-Willi syndrome associations, as well as people with PWS, their families and the professionals who work with them. As an international umbrella organisation we bring together the national Prader-Willi associations, and for countries where there are no formal associations, we support medical and parent delegates as part of our global community. IPWSO has contacts in over 120 countries, and is a world-wide parent-led support…
…people all over the world. It is about equipping communities with the right knowledge, at the right place, at the right time. In contrast to traditional teaching models, Project ECHO® is built around the idea of “all teach-all learn”, so when you join an IPWSO Project ECHO® programme everyone’s input is expected and valued and, in this way, we’ll create the “Learning Loop” that builds a PWS global community and knowledge network. Project ECHO® is…
…specialist services for people with PWS Scholarships Depending on availability of funds, IPWSO offers scholarships to attend our conferences. Contact us to keep up to date with conferences, workshops, meetings, and scholarship grants. Future conferences Has your Association thought about hosting an IPWSO conference? In the past these have been held in the Netherlands, Norway, Italy, USA, New Zealand, Romania, Taiwan, UK, Canada, Cuba and most recently Ireland. In 2025 we are delighted to be…
…the first in Romania in 2007. Since 2015 he has been the CEO of the Prader-Willi-Syndrom Institute Germany (PWS-ID). His interest in research is focused on empathy in PWS and the development and evaluation of training programs. Another field of interest is obesity. Hubert Soyer Background: Ph.D., Psychology and Pedagogics, Catholic University of EichstättIngolstadt, 2003. Dissertation: Studies on social and therapeutic pedagogy of Prader-Willi Syndrome. Diploma: Psychology, Catholic University of Eichstätt-Ingolstadt, 1999. Teaching profession for…
…in Havana. Previous conferences 2022: Ireland, 2019: Cuba, 2016: Canada, 2013: UK, 2010: Taiwan, 2007: Romania, 2004: New Zealand, 2001: USA, 1998: Italy, 1995: Norway, 1991: Netherlands. Scholarships Depending on availability of funds, IPWSO offers scholarships to attend our conferences. Contact us to keep up to date with conferences, workshops, meetings, and scholarship grants. Future conferences Has your Association thought about hosting an IPWSO conference? In the past these have been held in the Netherlands,…
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.