We are working with you to understand the impact of the global pandemic on the lives of people with Prader-Willi syndrome
BUILDING A GLOBAL SUPPORT NETWORK
IPWSO provides information, guidance and support to enable better access to diagnosis, care and treatment wherever you are in the world
What is PWS?
Prader-Willi syndrome is a multi-faceted and genetically-determined syndrome. The two main genetic causes and other rarer cause of PWS all involving chromosome 15 give rise to a pattern of atypical early development characterised by extreme floppiness and failure to thrive at birth with the subsequent emergence of severe over-eating and the risk of severe obesity if access to food is not controlled and also to other difficult behaviours, and the presence of learning disabilities, hormonal deficiencies, and specific physical characteristics. With knowledge and careful management and support the person with PWS can live a happy and well-adjusted life within the parameters of the syndrome.
Want to get involved?
Here at IPWSO we are working to ensure that people with Prader-Willi and their families have access to information, treatment and quality services and are integrated into their communities around the world. If you need support of any kind, would like your association to become a member, attend a conference or would like any further information please contact us.