On Tuesday, April 22, PWSA | USA and FPWR offered a PWS Community Town Hall for caregivers and guardians to hear more about people's lived experiences with VYKAT XR. Experiences were shared from individuals who participated in the phase 3 clinical tr...
Much of the research supported by FPWR is considered “basic science” or “discovery” research. The goal of these projects is to make measurements and collect data that define Prader-Willi syndrome (PWS) and advance our understanding of the molecular b...
Topics: News
Each May, our community comes together to shine a light on Prader-Willi syndrome and accelerate the research that is driving new treatments and transforming lives. Since 2010, PWS Awareness Month has mobilized families, advocates, and allies across t...
Topics: News
FPWR maintains the latest clinical trial information so that you can stay abreast of trial opportunities. Some trials require in-person visits, while others can be completed remotely. Some trials are testing new drugs, while others are intervention (...
Topics: Research
Lauren Schwartz-Roth, clinical psychologist and mom to a young adult with PWS, shares insights on supporting siblings and recognizing serious mental health challenges in her new guide. Raising a family is never easy, and parenting a child with PWS ad...
Topics: Resource Development, Research, Parents
We are thrilled to share that the FDA has approved the first treatment for hyperphagia (excessive hunger) in individuals with Prader-Willi syndrome (PWS). VYKAT XR (previously referred to as DCCR) is now approved for adults and children 4 years of ag...
Topics: News
FPWR is pleased to announce the launch of the Global Schaaf-Yang Syndrome Registry, an online registry for individuals with Schaaf-Yang syndrome (SYS) and their parents/caregivers.
Topics: SYS
Everything we do is made possible by you—our dedicated supporters and partners on this journey. Since 2003, FPWR has been committed to finding and funding the most promising research to advance treatments for Prader-Willi and Schaaf-Yang syndromes. T...
Harmony Biosciences recently interviewed three families about their experiences with Prader-Willi syndrome (PWS), excessive daytime sleepiness, and school.
