Prader-Willi Syndrome Association (UK)

The Prader Willi Syndrome Association (UK) is a voluntary organization located in the United Kingdom and dedicated to promoting the care, welfare, treatment, interests, education, and advancement of persons affected by Prader Willi syndrome. These goals are achieved by contacting and supporting families concerned with the disorder; raising funds; inviting and receiving contributions by way of subscriptions and donations; establishing mutual self-help groups; and fostering and supporting ongoing research. Prader Willi syndrome is a complex multisystem disorder characterized by muscular weakness during infancy (infantile hypotonia); failure to thrive; a decrease in the efficiency of the testes or ovaries (hypogonadism); short stature and impaired intellectual and behavioral functioning. Eating excessive amounts of food (hyperphagia) leads to severe obesity in early childhood and adolescence. Established in 1981, PWSA consists of 1,200 members, including people with PWS, parents and professionals from health, social services and education. The association produces various educational materials including a quarterly magazine and brochures. In addition, the association, conducts regular support group meetings and supports ongoing patient advocacy.