Foundation for Prader-Willi Blog

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

Exploring the HERO Trial: Investigating ARD‑101 for Hyperphagia in PWS

We recently hosted a webinar featuring Dr. Tien Lee and Dr. Manasi Jaiman of Aardvark Therapeutics. They dove into the science and promise behind ARD‑101—an innovative oral medication aimed at curbing hyperphagia in individuals with Prader‑Willi synd...

July 23, 2025 Read More

Topics: Hunger Satiety, Clinical Trials Opportunities

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...

July 17, 2025 Read More

Topics: Clinical Trials Opportunities

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

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...

July 7, 2025 Read More

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 (...

July 3, 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

FPWR Blog

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Should I Talk with My Child About Their PWS Diagnosis?

Exploring the HERO Trial: Investigating ARD‑101 for Hyperphagia in PWS

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

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

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

Post-Conference Glow: Highlights from United in Hope 2025

PWS Clinical Trials Alert

Understanding Swallowing Difficulties and Aspiration in Infants with PWS

Top 10 Learnings from the Global PWS Registry

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