IPWSO

Who we are

The International Prader-Willi Syndrome Organisation (IPWSO) was founded in 1991 by a group of parents and professionals to promote better information, support and international co-operation to bring about improvements in the lives of people with a rare genetically determined disorder called Prader-Willi syndrome (PWS). Since then we have grown to be an international membership body with 45 full (fee paying) country members and contacts in over 70 other countries. We became registered with the Charity Commission for England and Wales in 2019.

Our vision is a world where people with PWS have access to information, treatment and quality services and are integrated into their communities.

We provide information and support to professionals, caregivers and families around the world. Our particular aim is to support underserved populations, including people in countries where there is limited information about PWS and few, if any, services for people with people with PWS and their families.  One of IPWSO’s key functions is to fund diagnostic testing services (conducted by sending blood samples to a laboratory in Italy) for people in countries where this is not currently available.

We host an international conference every three years, the next one will be in the USA in 2025.