Foundation for Prader-Willi Blog

What's Happening in PWS Research: Summer 2025

Welcome to an inside look at some of the impactful research taking place to improve the lives of individuals with Prader–Willi syndrome (PWS). In this interview, four FPWR research team members—Theresa Strong, Lauren Schwartz-Roth, Marc Ridilla, and ...

August 19, 2025 Read More

Topics: Research

PWS Clinical Trials Alert

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 (...

August 4, 2025 Read More

Topics: Research

Should I Talk with My Child About Their PWS Diagnosis?

How should I talk with my child about their PWS diagnosis? This is a question many parents ask as their child grows, and differences between them and their typical peers may become more apparent. Will discussing the PWS diagnosis empower their child ...

July 29, 2025 Read More

Topics: Research

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

A newly published study on the use of guanfacine extended release (GXR) in individuals with Prader-Willi syndrome (PWS) marks an important step forward in addressing challenging behaviors such as aggression, skin-picking, and hyperactivity. Funded by...

July 15, 2025 Read More

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!

July 9, 2025 Read More

Topics: Research

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 ...

July 2, 2025 Read More

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...

June 24, 2025 Read More

Topics: Research, Research Blog

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...

June 10, 2025 Read More

Topics: Mental Health, Research, Parents

Inside the Cell: MAGEL2 Mislocalization and What It Means for SYS Research

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...

May 27, 2025 Read More

Topics: Research, Schaaf-Yang Syndrome

Foundation for Prader-Willi Blog | Research

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What's Happening in PWS Research: Summer 2025

PWS Clinical Trials Alert

Should I Talk with My Child About Their PWS Diagnosis?

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

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

Understanding Swallowing Difficulties and Aspiration in Infants with PWS

Top 10 Learnings from the Global PWS Registry

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

Inside the Cell: MAGEL2 Mislocalization and What It Means for SYS Research

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