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The FPWR Therapeutic Accelerator Program: Bridging Research and Development

January 26, 2026

While much of FPWR’s work starts with discovery research, our mission extends across the full drug development pathway, supporting progress from foundational science all the way to potential treatments for Prader-Willi syndrome (PWS). Discovery research is where scientists ask the

Pivotal Study Results of VYKAT™ XR Published

January 12, 2026

Soleno Therapeutics has published results from its pivotal Phase 3 clinical study of VYKAT™ XR (diazoxide choline extended-release tablets, DCCR) in The Journal of Clinical Endocrinology and Metabolism, a peer-reviewed journal for endocrine and metabolic research. The publication reports findings

Your 2025 Impact: FPWR Fundraising Wrapped

January 9, 2026

Every breakthrough, every milestone, and every step forward in 2025 had one thing in common: our community. Because supporters like you showed up. You shared your story. You asked others to stand with you. And it mattered. Here are just

Global PWS Registry 2.0 Launches with New VYKAT Module

January 8, 2026

The Global PWS Registry is powered by the dedication of patients and families who share their PWS experiences. Each piece of data collected helps unlock insights that fuel scientific discoveries and treatment breakthroughs. Registry data has already powered several important

Positive Preliminary Results with Setmelanotide and Evaluation of RM-718 for PWS

December 18, 2025

Rhythm Pharmaceuticals has shared positive preliminary results from its exploratory Phase 2 trial of setmelanotide in people with PWS and announced, pending successful completion of this phase, plans to advance setmelanotide into a Phase 3 trial. Additionally, the company is

Self-Care for Caregivers: Your Well-Being Matters

December 9, 2025

Caring for a child or adult with Prader-Willi syndrome (PWS) often means juggling medical appointments, behavior plans, daily routines, and the emotional ups and downs that come with them. Too often, caregivers put their own needs last — not because

Reflecting on 2025 - Progress and Hope for the PWS Community

Reflecting on a Year of Breakthroughs, Milestones, and Momentum

December 3, 2025

As we wrap up 2025, we’re celebrating a year shaped by real progress… scientific breakthroughs, new treatment pathways, and meaningful improvements in care for people with Prader-Willi syndrome (PWS) and Schaaf-Yang syndrome (SYS). Every step forward this year was fueled

Managing Behavior and Flexibility in PWS: Expert Strategies

November 18, 2025

Behavioral challenges are one of the most complex parts of Prader-Willi syndrome (PWS). Anxiety, rigidity, difficulty with transitions, and emotional overwhelm can affect daily life at home, at school, and in the community. Families often ask: Will treating hyperphagia improve

Caregiver Perspectives: Insights on the COMPASS-PWS Trial

November 13, 2025

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) convened a patient forum to

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