Mark your calendars and join us October 9–10, 2026, as parents, caregivers, and medical professionals from across the country gather in Philadelphia, Pennsylvania for FPWR’s 2026 PWS Family Conference — a two-day event designed to connect, learn, and...
We are pleased to announce the recipients of our second round of grants for 2025, totaling $925,117 in awards, as part of the Foundation for Prader-Willi Research’s (FPWR) ongoing commitment to advancing innovative research and bold initiatives in Pr...
Topics: Research, Schaaf-Yang Syndrome
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
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
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...
Topics: Research
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 ...
Topics: Research
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 ...
Topics: Research
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
