Prader-Willi syndrome (PWS) is a rare, complex, lifelong genetic condition which is present from birth. People with the syndrome may appear to have few issues, particularly if their weight has been well-managed, but it is only ongoing management and continuous supervision which prevents a situation becoming critical. Unlimited access to food can result in rapid weight gain, with potentially fatal consequences. Most individuals have a mild to moderate learning disability, though some have severe learning disabilities and others have a measured IQ of over 70, occasionally as high as 100 or more. However even those with no measured learning disability struggle as adults to live independently because of the challenges presented by PWS. Provision should be tailored to the individual needs of people with PWS, as well as the complexities the syndrome.

Information for those inspecting a PWS Service