Foundation for Prader-Willi Blog

PWS Clinical Trials Alert

FPWR maintains the latest clinical trial information so that you can stay abreast of trial opportunities. Some trials require in-person visits, while others can be completed remotely. Some trials are testing new drugs, while others are intervention (...

March 18, 2025 Read More

Topics: Research

Announcing the Launch of the Global Schaaf-Yang Syndrome Registry

FPWR is pleased to announce the launch of the Global Schaaf-Yang Syndrome Registry, an online registry for individuals with Schaaf-Yang syndrome (SYS) and their parents/caregivers.

March 17, 2025 Read More

Topics: SYS

Your Impact 2024

Everything we do is made possible by you—our dedicated supporters and partners on this journey. Since 2003, FPWR has been committed to finding and funding the most promising research to advance treatments for Prader-Willi and Schaaf-Yang syndromes. T...

March 13, 2025 Read More

School Interrupted: Three Families Share their Experiences with PWS and Excessive Daytime Sleepiness at School

Harmony Biosciences recently interviewed three families about their experiences with Prader-Willi syndrome (PWS), excessive daytime sleepiness, and school.

March 10, 2025 Read More

The Power of Representation in the PWS Community

When Karine’s son, Olivier, was diagnosed with Prader-Willi Syndrome (PWS), she searched for something beyond medical information—she was looking for people who looked like him. She wanted to see a future for her child, one that felt familiar and hop...

March 4, 2025 Read More

Topics: Parents, Partners, PWS People, Advocacy

FPWR Announces Executive Committee Appointments and Welcomes New Board Members for 2025

The Foundation for Prader-Willi Research (FPWR) is excited to announce key updates to its board leadership and membership for 2025. With these changes, FPWR continues to prioritize its mission of eliminating the challenges of Prader-Willi syndrome (P...

February 24, 2025 Read More

CRISPR Breakthrough Brings New Hope for Treating PWS

Exciting new research funded by FPWR has brought us one step closer to an effective gene therapy for Prader-Willi syndrome (PWS). Led by Dr. Charles Gersbach, a pioneer in CRISPR technology at Duke University, a team of biomedical engineers has ident...

February 24, 2025 Read More

Urgent Action Needed: NIH Cuts Threaten Critical Research

On February 7th, the National Institutes of Health (NIH) announced a drastic, immediate reduction in overhead funding for universities, medical centers, and research institutions—cutting indirect costs to a flat 15% rate. This significant reduction j...

February 20, 2025 Read More

Share Your Rare: HopeFull Highlights for Rare Disease Day

As Rare Disease Day approaches on February 28, we want to spotlight the extraordinary qualities of our children with Prader-Willi syndrome, celebrating their unique passions and contributions to the world. Our objective is simple:to inspire hope. We ...

February 19, 2025 Read More

Topics: Stories of Hope

FPWR Blog

Categories

PWS Clinical Trials Alert

Announcing the Launch of the Global Schaaf-Yang Syndrome Registry

Your Impact 2024

School Interrupted: Three Families Share their Experiences with PWS and Excessive Daytime Sleepiness at School

The Power of Representation in the PWS Community

FPWR Announces Executive Committee Appointments and Welcomes New Board Members for 2025

CRISPR Breakthrough Brings New Hope for Treating PWS

Urgent Action Needed: NIH Cuts Threaten Critical Research

Share Your Rare: HopeFull Highlights for Rare Disease Day

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