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FPWR Blog

FPWR

Recent Posts

Behavior and Flexibility in PWS: Expert Advice for Families

Behavioral challenges are among the most difficult aspects of Prader-Willi syndrome (PWS). These challenges affect the individual, family, school, and community. Anxiety, rigidity, and difficulty with transitions can make daily life unpredictable and...

Topics: Parents, Behavior

Caregiver Perspectives: Insights on the COMPASS-PWS Trial

Background In response to Acadia Pharmaceuticals’ announcement that the COMPASS-PWS Phase 3 trial of intranasal carbetocin did not meet its primary or secondary endpoints and would not advance further, the Foundation for Prader-Willi Research (FPWR) ...

Endocrine Care for Children with Prader-Willi Syndrome: 2025 Conference Insights

Understanding the endocrine system is essential for managing Prader-Willi syndrome (PWS). From infancy through adulthood, hormone-related challenges shape growth, development, metabolism, and overall health. In this 2025 FPWR Conference presentation,...

Topics: Therapeutic Development, Research

Artist of the Year 2025 Winners: Celebrating Creativity and Hope

A special blog contribution from our 2025 FPWR Art Auction Participants.

Topics: Stories of Hope

PWS Clinical Trials: 2025 Conference Recap and How Families Can Help

Clinical trials are the bridge between discovery and real-world treatments, and families in the Prader-Willi syndrome (PWS) community play a critical role in making them possible.

Topics: Research, Clinical Trials Opportunities

5 Treatments to Improve Quality of Life for People with PWS

FPWR is dedicated to advancing research and accelerating the development of safe and effective treatments for people with Prader-Willi syndrome (PWS). While significant unmet needs remain, there are several therapies—both established and emerging—tha...

Soleno Therapeutics Announces New Investment in PWS Research

Soleno Therapeutics is committing up to $5 million to accelerate progress toward a cure for Prader-Willi syndrome by funding groundbreaking genetic research.

Two Exciting Research Opportunities for Families of Children with PWS

Families of children with Prader-Willi syndrome (PWS), your participation has the power to make a real difference—not only for your own child, but for the PWS community at large. Below are two research studies currently recruiting through the Neurode...

Phase 3 COMPASS PWS Trial of Intranasal Carbetocin Does Not Meet Primary Endpoint

We are saddened to share disappointing news from Acadia Pharmaceuticals. The Phase 3 COMPASS clinical trial evaluating intranasal carbetocin (ACP-101) in individuals with PWS did not meet its primary endpoint of reducing hyperphagia. The study also s...