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FPWR

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

Modafinil and Daytime Sleepiness in Prader-Willi Syndrome

January 15, 2026

Excessive daytime sleepiness (EDS) is one of those symptoms of Prader-Willi syndrome (PWS) that often does not get the attention it deserves. EDS can profoundly undermine success in older children and adults with PWS. It is hard to learn anything

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

Are GLP-1s Safe and Effective for People with PWS?

January 6, 2026

You have probably heard of GLP-1 receptor agonists (GLP-1s). You may even know someone who has successfully lost weight using one of these popular medications. But what about their safety and effectiveness for people with Prader-Willi syndrome (PWS)? GLP-1s are

Recent Publications Explore Pitolisant as a Treatment for Daytime Sleepiness in PWS

Pitolisant for Daytime Sleepiness in PWS: New Research Findings

December 23, 2025

Families and caregivers in the Prader-Willi syndrome (PWS) community whose loved one experiences excessive daytime sleepiness (EDS) know just how challenging it can be in daily life. Data from the Global PWS Registry show that 55% of participants experience significant

Positive Preliminary Results with Setmelanotide and Plans for 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 has

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

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