New call-to-action
New call-to-action
New call-to-action

FPWR Blog

Categories

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 24, 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

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, Schaaf-Yang Syndrome

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, Schaaf-Yang Syndrome

Clinical Trials Matter: Three PWS Families Share Their Views

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.
May 13, 2025 Read More

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).

4star120x60

NORD_MembershipLogo_Platinum_2021

excellence-in-giving-logo

Main Menu

Our Mission

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

Contact Us

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

FPWR
440 N Barranca Ave #3620
Covina, CA 91723

Copyright © 2020. All Rights Reserved. Terms of Use. Privacy Policy. Copyright Infringement Policy. Disclosure Statement.