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FPWR Blog

FPWR

Recent Posts

Pivotal Study Results of  VYKAT™ XR Published

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 metab...

Topics: News

Your 2025 Impact: FPWR Fundraising Wrapped

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.

Topics: News

Global PWS Registry 2.0 Launches with New VYKAT Module

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.

Topics: News

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

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)?

Topics: Hunger Satiety, Obesity and Energy Balance, Research, PWS People

Pitolisant for Daytime Sleepiness in PWS: New Research Findings

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 exp...

Topics: Research

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

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. Add...

Topics: News

Self-Care for Caregivers: Your Well-Being Matters

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 ...

Topics: Parents

Reflecting on 2025: A Year of Breakthroughs, Milestones, and Momentum

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).

Topics: News

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