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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

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

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

Improving the PWS Clinical Trial Experience for Families and Clinical Study Site Staff

November 29, 2023

It has been an exciting time for PWS research and clinical trials. The field has been working hard to find effective treatments for the symptoms of PWS to help our children lead more independent and fulfilling lives. In the last

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

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