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Foundation for Prader-Willi Blog | Resource Development

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The PWS Clinical Investigation Collaborative (PWS-CLIC): Advancing Care for Your Loved Ones

If your loved one has Prader-Willi syndrome (PWS), you know how important expert medical care is to managing the complexities of the condition. The good news is that a dedicated group of doctors has partnered with FPWR to create a nationwide network ...
January 22, 2026 Read More

Topics: Resource Development

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 ...
May 19, 2025 Read More

Topics: Resource Development, Parents, Advocacy

New Resource for Parents: Helping Siblings Thrive in a PWS Family

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 situati...
February 4, 2025 Read More

Topics: Resource Development, Parents

FPWR Genome Study Insights: Caregiver Views on Pharmacogenomics for PWS

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 PW...
May 27, 2024 Read More

Topics: Resource Development, Research, Parents

Advancing Prader-Willi Syndrome Care With the PWS Profile

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 em...
May 13, 2024 Read More

Topics: News, Resource Development, Research

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

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 several years, there ...
November 29, 2023 Read More

Topics: News, Clinical Issues, Resource Development

Partnership with CombinedBrain Establishes Biorepository for PWS & SYS

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 COMBINEDBrai...
July 19, 2023 Read More

Topics: Resource Development, Volunteer

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).

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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

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