Foundation for Prader-Willi Blog

Top 10 Learnings from the Global PWS Registry

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 a...

June 17, 2025 Read More

Topics: Research, Research Blog

HERO Study Now Enrolling People With PWS

A new clinical trial aims to provide relief from hyperphagia for people with Prader-Willi Syndrome. HERO is a global Phase 3 clinical trial investigating ARD‑101, an investigational oral medication aimed at reducing hyperphagia. This trial is current...

June 12, 2025 Read More

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

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 Registr...

June 10, 2025 Read More

Topics: Mental Health, Research, Parents

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

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.

June 9, 2025 Read More

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 (...

June 5, 2025 Read More

Topics: Research

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

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, Carolyn is rallying ...

June 4, 2025 Read More

Topics: Stories of Hope

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

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 in cell function and is missing or alter...

May 27, 2025 Read More

Topics: Research, Research Blog, SYS

RareCAP: A New Resource Bringing Expert PWS Care Within Reach

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 m...

May 19, 2025 Read More

Topics: Resource Development, Parents, Advocacy

FPWR Announces 1st Round of 2025 Grants

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 S...

May 14, 2025 Read More

Topics: Research, SYS

FPWR Blog

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Top 10 Learnings from the Global PWS Registry

HERO Study Now Enrolling People With PWS

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

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

PWS Clinical Trials Alert

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

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

RareCAP: A New Resource Bringing Expert PWS Care Within Reach

FPWR Announces 1st Round of 2025 Grants

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