Topics: Clinical Trials Opportunities
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...
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 ...
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
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...
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
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
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...
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
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.






