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Understanding Swallowing Difficulties and Aspiration in Infants with PWS

July 2, 2025

Did you know that swallowing issues are extremely common in babies with Prader-Willi syndrome (PWS)? A recent study from Cook Children’s Medical Center (CCMC) in Texas took a closer look—and what they found is something every clinician and parent of

Top 10 Learnings from the Global PWS Registry

June 24, 2025

Thanks to nearly 2,000 participants completing a collective 61,795 surveys, the Global PWS Registry continues to be a vital resource for the PWS community—adding to our body of knowledge, improving how we care for our loved ones, and helping inform

Life Satisfaction, Global Health, and Mood in PWS: What a New Study Reveals

June 10, 2025

The FPWR research team recently published a new study that helps us better understand mood, general health, and life satisfaction in individuals with Prader-Willi syndrome (PWS). The findings are based on data collected through the Global PWS Registry using three

Global PWS Registry Supports 1st FDA-Approved Treatment for People with PWS

June 9, 2025

Behind the recent FDA approval of the first treatment for hyperphagia in PWS is a powerful story of patient data and community collaboration—driven by the Global PWS Registry. Through our PATH for PWS study, families shared their lived experiences with

From NICU to Leading the Walk: Miles’ Story and the Power of One Small Step

June 4, 2025

When Carolyn’s son Miles was diagnosed with Prader-Willi syndrome, she faced a new world of unknowns. But it didn’t take long for her to channel that uncertainty into action. Now, in her second year hosting a One Small Step walk,

Inside the Cell: MAGEL2 Mislocalization and What It Means for SYS Research

May 27, 2025

What if the key to treating a rare genetic condition lies not just in whether a protein is present—but in where it ends up inside the cell? This is the case with the MAGEL2 protein, which plays a critical role

RareCAP: A New Resource Bringing Expert PWS Care Within Reach

May 19, 2025

Finding a doctor who understands Prader-Willi syndrome (PWS) isn’t always easy, especially in urgent or emergency situations. That’s why we’re excited to introduce a new tool that puts trusted PWS medical guidance into the hands of those who need it

FPWR Announces 1st Round of 2025 Grants

May 14, 2025

We are pleased to announce the recipients of our first round of grants for 2025, totaling $1,198,949 in awards, as part of the Foundation for Prader-Willi Research’s (FPWR) ongoing commitment to advancing research in Prader-Willi syndrome (PWS) and Schaaf-Yang syndrome

Clinical Trials Matter: Three PWS Families Share Their Views

May 13, 2025

Harmony Biosciences recently met with three families impacted by Prader-Willi syndrome (PWS) to better understand their views on clinical trials for PWS symptoms including excessive daytime sleepiness. A lot has changed since PWS was first identified and named in 1956,

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