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Foundation for Prader-Willi Blog | News

The Global PWS Registry: Turning Lived Experience Into Better Care

Families living with Prader-Willi syndrome are changing how PWS is understood, studied, and treated.

Topics: News, Research, Parents

Aardvark Therapeutics Expands HERO Trial Eligibility

Aardvark Therapeutics has announced an update to its Phase 3 HERO trial that will allow more children and families affected by Prader-Willi syndrome to participate.The trial evaluating ARD-101 will now allow children as young as 7 years old to enroll...

Topics: News

The FPWR Therapeutic Accelerator Program: Bridging Research and Development

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).

Topics: News

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

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

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

Harvesting Hope 2025: Walk, Run, or Shake Your Tailfeather

Ready to put purpose in your steps? The Harvesting Hope Distance Challenge is back starting October 16! Whether you walk, run, or waddle, every step funds critical research for Prader-Willi and Schaaf-Yang syndromes. And the best part? Thanks to a ge...

Topics: News