Prader-Willi Syndrome Across Cultures

PWS is a rare genetic disorder that affects people across the world. It is associated with a complex mixture of physical, cognitive and intellectual impairments and with a high risk for mental ill-health. It reduces the connection between food consumption and feelings of satiety, meaning it often leads to dangerous levels of overeating.

Through comparative online interviews and focus-groups in Mexico, India, Nigeria, Cote D’Ivoire, and Ghana this research investigates variations in how caregivers respond to the needs of people with PWS in the under-researched context of the Global South.

Led by researchers trained in anthropology and global health, the project uses methods for applied transdisciplinary research to partner with key international researchers and organisations in the field of Prader-Willi Syndrome to bring about meaningful change.

Researchers

Dr Patrick McKearney, International Prader-Willi Syndrome Organisation

Tony Holland, International Prader-Willi Syndrome Organisation

Angela Rodriguez Almaraz, Fundación Maria José

Patrcyja Andrychowicz, The Indian Prader-Willi Syndrome Organisation

Warren Dansou, The African Society for Paediatric Endocrinology