The International Prader - Willi Syndrome Organisation has been working with people living with Prader Willi and their families for 30 years, and has expanded all over the world and now has 37 member organisations and links in over 100 different countries.

The organization's International role requires them to work around constraints like time zones and always forces it to be at the forefront of changing political and socio-economic changes that are happening world wide.

Tony Holland the organisation's President has been with them since their first meeting in 1991 and today he shares his stories and his experience with us.