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Resource Development

RareCAP: An Important 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. RareCAP is a free tool that puts trusted PWS medical guidance into the hands of those who need it most: families, caregivers, and

Resource for Parents: Helping Siblings Thrive in a PWS Family

February 4, 2025

The challenges of Prader-Willi syndrome extend beyond the individual diagnosed to the entire family. Siblings growing up in a household with a person with PWS may need extra support to help them navigate their new normal and the unique family

Questionnaire Measures Hyperphagia in PWS Clinical Trials

November 14, 2024

Measuring hyperphagia is essential to developing and evaluating treatments for Prader-Willi syndrome (PWS). But because hyperphagia involves complex food-related thoughts and behaviors, researchers need tools specifically designed to capture these experiences. In 2016, Zafgen, Inc. donated its Hyperphagia Questionnaire for

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

The PWS Profile: A Tool for Measuring Behavioral and Emotional Symptoms in PWS

May 13, 2024

Prader-Willi syndrome affects much more than appetite. Behavioral and emotional challenges—including rigidity, anxiety, compulsive behaviors, repetitive questioning, and temper outbursts—can have a significant impact on daily life. For researchers developing treatments for PWS, measuring these symptoms is an important challenge.

Partnership with CombinedBrain Establishes Biorepository for PWS & SYS

July 19, 2023

Biorepositories play a crucial role in rare disease research, serving as central locations for collecting, storing, and distributing samples such as tissues, blood, and cells. The Foundation for Prader-Willi Research, in partnership with COMBINEDBrain, has established PWS and SYS biorepositories

The PADQ: a PWS-Specific Tool for Measuring Anxiousness and Distress

October 18, 2022

Anxiousness and distress are common and challenging aspects of PWS. Worry about schedules, food, changes in routine, or other aspects of daily life can lead to significant distress and can affect the entire family. The Global PWS Registry indicates that

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