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Foundation for Prader-Willi Blog | News (2)

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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.
January 8, 2026 Read More

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...
December 18, 2025 Read More

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).
December 3, 2025 Read More

Topics: News

Caregiver Perspectives: Insights on the COMPASS-PWS Trial

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) ...
November 13, 2025 Read More

Topics: News, Parents, Clinical Trials

Soleno Therapeutics Announces New Investment in PWS Research

Soleno Therapeutics is committing up to $5 million to accelerate progress toward a cure for Prader-Willi syndrome by funding groundbreaking genetic research.
October 14, 2025 Read More

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...
October 7, 2025 Read More

Topics: News

Phase 3 COMPASS PWS Trial of Intranasal Carbetocin Does Not Meet Primary Endpoint

We are saddened to share disappointing news from Acadia Pharmaceuticals. The Phase 3 COMPASS clinical trial evaluating intranasal carbetocin (ACP-101) in individuals with PWS did not meet its primary endpoint of reducing hyperphagia. The study also s...
September 24, 2025 Read More

Topics: News

Soleno Therapeutics Releases a Statement to the PWS Community

A message from Soleno Therapeutics to our PWS Community:
August 26, 2025 Read More

Topics: News

Honoring Leaders Who Inspire: 2025 FPWR Award Recipients

Each year, the Foundation for Prader-Willi Research (FPWR) recognizes outstanding individuals who have made a profound difference in the lives of those affected by Prader-Willi syndrome. This year, we honored two remarkable leaders for their contribu...
August 18, 2025 Read More

Topics: News

About FPWR

The Foundation for Prader-Willi Research (federal tax id 31-1763110) is a nonprofit corporation with federal tax exempt status as a public charity under section 501(c)(3).

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Our Mission

The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.

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Foundation for Prader-Willi Research
Phone: 888-322-5487
Email: info@fpwr.org

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440 N Barranca Ave #3620
Covina, CA 91723

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