Topics: Parents, Partners, PWS People, Advocacy
When Karine’s son, Olivier, was diagnosed with Prader-Willi Syndrome (PWS), she searched for something beyond medical information—she was looking for people who looked like him. She wanted to see a future for her child, one that felt familiar and hop...
Meet Team FPWR, a powerhouse group of eleven incredible individuals lacing up their sneakers to conquer the New York City Marathon on November 3, 2024! Each runner brings a unique story and a shared passion for supporting Prader-Willi syndrome resear...
Topics: Stories of Hope, PWS People
PWS impacts many aspects of our children’s lives. The hallmark struggle for those affected by PWS is hyperphagia, or excessive appetite. But beyond hyperphagia, individuals with PWS are susceptible to other behavioral and emotional problems that affe...
Topics: News, Resource Development, Research, PWS People
The PWS-Clinical Investigation Collaborative (PWS-CLIC) is a network of PWS clinical experts, formally established in 2021. The work of the PWS-CLIC is supported by FPWR. This network has expanded over the past two years and now includes 25 clinical ...
Topics: Research, PWS People
The Foundation for Prader-Willi Research has partnered with COMBINEDBrain to establish a biorepository of blood and urine samples that will help speed treatments for people with PWS and other neurodevelopmental disorders. Biorepositories play a cruci...
Topics: PWS People, Volunteer, SYS