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International Prader-Willi Syndrome Organisation

IPWSO's mission is to raise the quality of life for all people with Prader-Willi Syndrome (PWS) and their families. IPWSO has 101 country members and fosters the formation of new associations throughout the world. IPWSO provides free diagnosis for families living in countries where this service is not available. Even in the most remote places in the world, IPWSO has provided legal and medical services for people with PWS in crisis.

We support families in countries around the world, but in particular in countries where there is very little knowledge about Prader-Willi syndrome, very little support and where information is severely limited.  We raise funds to translate information into many languages, we support PW conferences and meetings, and we have a triennial international PW conference hosted by different countries where families, professionals, scientists and researchers gather to share knowledge.  We provide a free diagnostic service where this might not otherwise be available in the country.  

We have two part-time workers and a team of pro-bono professionals.  Together we build and share information throughout the world.  This needs translation services.  We provide a blood-spot diagnostic service from a partnership laboratory in Italy.  We subsidise this so that it is free to families around the world.  We send professional speakers to countries where little or no information is readily available, but where families have gathered to form an association.  We have a 24 hour internet information service where email queries are answered and, if needed, referred to professionals on our boards. 

Contact Details

Douglas House, 18b Trumpington Road, Cambridge, CB2 8AH, UK, Cambridge, Cambridgeshire, UNITED KINGDOM - CB2 8AH

Cause Registration

Revenue (Charities Unit) (CHY): International