Prader-Willi Syndrome Awareness Month
Prader-Willi Syndrome affects many children and families around the world, but can be hard to diagnose. Educate yourself on the symptoms and treatments.
Position your healthcare, diagnostic, or support services as trusted resources for families navigating Prader-Willi Syndrome diagnosis and management during awareness month.
- Early detection saves lives: share diagnostic pathways and genetic testing options
- Family support stories: highlight how your services help PWS families manage symptoms and improve quality of life
- Educational webinars on chromosome 15 abnormalities and hypothalamic dysfunction for healthcare professionals
- Partner with PWS nonprofits to amplify awareness and reach affected families seeking resources
Prader-Willi Syndrome was discovered and first diagnosed in 1956 by Swiss doctors Andrea Prader, Alexis Labhart, and Heinrich Willi. After they observed nine children with common characteristics, such as small hands and feet, weak muscles from birth, intellectual disabilities, on-set childhood obesity, and constant hunger, they were able to determine that thee symptoms were caused by a disorder that wasn’t named yet.
Today, doctors can determine this syndrome through genetic testing, as they have now found that this syndrome is caused by an abnormality of chromosome 15, which results in the dysfunction of the hypothalamus, or the part of the brain that controls functions such as hunger, emotions, fertility, and body temperature.
Prader-Willi is part of a spectrum, similar to Autism and ADHD, which means infants and children could have a varying degree of symptoms and be misdiagnosed as a result. As more research became relevant, the holiday itself began to form. In 2009, representatives Ed Royce and Jane Harman introduced the holiday to the House of Representatives in the United States.
From there, it passed as an official month-long holiday to be observed. Organizations such as the Foundation for Prader-Willi research and the Prader Willi Syndrome Association now sponsor the holiday as one of their main events for fundraisers and contests, where the money collected will go towards research to help families manage and treat the disorder.