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Research (6)

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

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

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

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

PWS Registry Data: Skin Picking in PWS [INFOGRAPHIC]

April 9, 2024

Individuals with PWS often exhibit a variety of self-injurious behaviors, and one of the most common of these is skin picking. Individuals typically start with a fixation on some imperfection in the skin. This can be a rough or dry

Blog Post - conference video - Behavior and Mental Health - Age 5 and Up

Behavior and Mental Health - Age 5 and Up [2023 CONFERENCE VIDEO]

March 14, 2024

In this 30‑minute video, Patrice Carroll, Elizabeth Roof, and Dr. Deepan Singh discuss strategies for addressing behavioral and mental health challenges in children aged 5 and up with Prader-Willi syndrome. Click below to watch the video. If you're short on

Feeding Tubes in Babies With PWS: What Parents Should Know Before Leaving the NICU.

February 13, 2024

Feeding difficulties are very common in babies with Prader-Willi syndrome (PWS), and many babies require a feeding tube to get enough nutrition safely. New research from the Global PWS Registry provides helpful information about how feeding tubes are used in

New Research into the Sense of Smell in PWS

January 31, 2024

It is well established in science as well as culture that the smell of food is linked to appetite, but despite the extensive research being conducted to understand the biology underlying the most notable symptom of Prader-Willi Syndrome, hyperphagia, little

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