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FPWR Blog

Now Enrolling: Participate in the TEMPO PWS Study Without Leaving Home

We’re excited to share a new opportunity to take part in the TEMPO clinical trial—from the comfort of your own home! Harmony Biosciences has launched a 100% virtual site for the TEMPO study of pitolisant in individuals with Prader-Willi syndrome (PWS...

Topics: Clinical Trials Opportunities

Clinical Trial Results Show Promise for Managing Aggression and Hyperactivity in PWS

A published study on the use of guanfacine extended release (GXR) in individuals with Prader-Willi syndrome (PWS) marks an important step forward, showing that guanfacine can improve challenging PWS behaviors, including aggression, skin-picking, and ...

Topics: Research, Behavior

Acadia’s COMPASS PWS Study Fully Enrolled – Results Expected Early Q4 2025

We’re excited to share that Acadia Pharmaceuticals has officially completed enrollment for its Phase 3 COMPASS PWS clinical trial of ACP-101 in individuals with Prader-Willi syndrome (PWS)—three months ahead of schedule!

Topics: Research

Post-Conference Glow: Highlights from United in Hope 2025

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...

Understanding Swallowing Difficulties and Aspiration in Infants with PWS

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

Top 10 Learnings from the Global PWS Registry

Thanks to nearly 2,000 participants completing a collective 61,795 surveys, the Global PWS Registry continues to be a vital resource for the PWS community—adding to our body of knowledge, improving how we care for our loved ones, and helping inform a...

Topics: Research, Research Blog

HERO Study Now Enrolling People With PWS

A new clinical trial aims to provide relief from hyperphagia for people with Prader-Willi Syndrome. HERO is a global Phase 3 clinical trial investigating ARD‑101, an investigational oral medication aimed at reducing hyperphagia. This trial is current...

Life Satisfaction, Global Health, and Mood in PWS: What a New Study Reveals

The FPWR research team recently published a new study that helps us better understand mood, general health, and life satisfaction in individuals with Prader-Willi syndrome (PWS). The findings are based on data collected through the Global PWS Registr...

Topics: Mental Health, Research, Parents

Global PWS Registry Supports 1st FDA-Approved Treatment for People with PWS

Behind the recent FDA approval of the first treatment for hyperphagia in PWS is a powerful story of patient data and community collaboration—driven by the Global PWS Registry.