Still United, Still Inspired We're still riding the wave of connection, energy, and inspiration from United in Hope 2025! This incredible event brought together three powerful organizations - the Foundation for Prader-Willi Research (FPWR), the Prade...
FPWR
Recent Posts
Did you know that swallowing issues are extremely common in babies with Prader-Willi syndrome (PWS)? A recent study from Cook Children’s Medical Center (CCMC) in Texas took a closer look—and what they found is something every clinician and parent of ...
Topics: Research, Parents, Children 0-3
What if the key to treating a rare genetic condition lies not just in whether a protein is present—but in where it ends up inside the cell? This is the case with the MAGEL2 protein, which plays a critical role in cell function and is missing or alter...
Topics: Research, Schaaf-Yang Syndrome
Finding a doctor who understands Prader-Willi syndrome (PWS) isn’t always easy—especially in urgent or emergency situations. That’s why we’re excited to introduce a new tool that puts trusted PWS medical guidance into the hands of those who need it m...
Topics: Resource Development, Parents, Advocacy
Harmony Biosciences recently met with three families impacted by Prader-Willi syndrome (PWS) to better understand their views on clinical trials for PWS symptoms including excessive daytime sleepiness.
Human beings have adapted to our planet's 24-hour days. The body goes through daily cycles that affect things like metabolism, physical functions, and mood—these 24-hour cycles are called the circadian rhythm. What you may not know is that this adapt...
We’re excited to share an important opportunity for families in the Prader-Willi syndrome (PWS) community to contribute to groundbreaking research that could help shape the future of treatments for hyperphagia. The MY-HQ ("my hyperphagia questionnair...
Topics: Hunger Satiety, Research, Parents, Adults, Children 12-18
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
