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Webinar: What You Can Expect if You Participate in TEMPO, a Phase 3 Trial of Pitolisant

June 18, 2024

If your loved one with PWS struggles with daytime sleepiness, you may be interested in learning more about TEMPO, a phase 3 study of Pitolisant, now enrolling volunteers with PWS ages 6 to 65 years old. This study will evaluate

Understand Drug Development for Rare Diseases: Free Online Series

June 18, 2024

Have you ever wanted to know more about the drug development process and how patients and patient organizations like FPWR can engage with and inform the process? The National Organization for Rare Diseases (NORD) has developed a free educational series

Why We Are HopeFULL for the Future of People with Prader-Willi Syndrome

June 13, 2024

Prader-Willi syndrome (PWS) is a complex genetic disorder with a range of challenging symptoms, including hyperphagia (excessive hunger), obesity, and behavioral issues. Despite these challenges, recent advancements in medical research and therapeutic developments offer substantial hope for individuals with PWS

Early School Years — Ages 3-8 [2023 Conference Video]

June 5, 2024

In this 1 hour and 52-minute video, Dr. Anastasia Dimitropoulos of the PRETEND Program, Staci Zimmerman, and Cindy Szapacs discuss social strategies, IEPs, and behavior in the early school years for children with PWS. Click below to watch the video.

FPWR Genome Study Insights: Caregiver Views on Pharmacogenomics for PWS

May 27, 2024

The FPWR Genome Study, full title “Whole Genome and RNA Sequencing Analysis in Prader-Willi Syndrome," is an ongoing whole genome sequencing study among 50 individuals with PWS. The goal of the study is to determine if genetic variants outside the

Recent Advances in Drug Development Bring Treatments Within Reach for PWS

May 21, 2024

Exciting developments are sweeping through the PWS community, spotlighting two potential treatments: Soleno’s DCCR and Aardvark’s ARD-101. Recognition of the PWS community's involvement must be given, as hundreds of volunteers have participated in PWS clinical trials and the Global PWS

FPWR Announces 1st Round of 2024 Grants

May 15, 2024

We are pleased to announce the recipients of our first round of grants for 2024, totaling more than $1,000,000 in awards, as part of the Foundation for Prader-Willi Research's (FPWR) ongoing commitment to advancing research in Prader-Willi (PWS) and Schaaf-Yang

Advancing Prader-Willi Syndrome Care With the PWS Profile

May 13, 2024

Prader-Willi syndrome (PWS) impacts many parts of our children’s lives. While the hallmark challenge is hyperphagia—an uncontrollable, excessive appetite—there’s much more beneath the surface. Children and adults with PWS often face behavioral and emotional struggles, including anxiety, rigid thinking, repetitive

Sharing Strength for PWS Awareness Month

May 7, 2024

May marks Prader-Willi Syndrome (PWS) Awareness Month, shedding light on the complex genetic disorder that brings various challenges to individuals. However, it's important to remember that PWS doesn't define the incredible individuals living with it. To honor this month, we

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