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 47 full (fee paying) country members and contacts in over 120 other countries. We became registered with the Charity Commission for England and Wales in 2019.

Our vision is a world where people with PWS and their families receive the services and support they need to fulfil their potential and achieve their goals.

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 them and their families.  IPWSO funds a diagnostic screening service (conducted by sending blood samples to a laboratory in Italy) for people in countries where screening for PWS is not currently available, provides an advice service, supports research, advocates on behalf of people with PWS at a global level, engages in educational outreach activities and provides travel scholarships and awards for small projects, conferences and workshops and initiatives designed to increase knowledge and build our global PWS community. 

We host an international conference every three years and our 13th International PWS Conference will be in Brazil in 2028.

We build community. We want everyone with PWS to get equal access to diagnosis and treatment. We work to ensure research into the syndrome works for evryone and reflects their diverse experiences and environments.

Our culture and values

Global solidarity - we are committed to working for a more equal world.

Commitment to science - we believe that people with PWS and their families deserve clinical care, treatment recommendations, services and support that are based on rigorous empirical research and we will promote scientific reasoning throughout our organisation.

Collaboration - premised on the belief that we can all learn from each other and benefit from each other's work, we are committed to fostering new relationships, willingly support others and working co-operatively with diverse stakeholders in pursuit of common goals.

Respect for all - we are committed to equality for all people.

Equality, diversity and inclusion policy

Promoting equality and valuing diversity are fundamental to our mission. We will not accept unfair discrimination or less favourable treatment on the grounds of race, sex, gender, sexual orientation, age, religion, or belief, disability, marriage and civil partnership, gender reassignment, pregnancy and maternity or trade union activity as an employer or in the running of our organisation