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Foundation for Prader-Willi Blog | Research

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When the Well-Being of Caregivers is Supported, Everyone Benefits

Parents of children with Prader-Willi syndrome don’t need to be told that caregiving is hard — you live it every day. You juggle medical complexity, behavioral challenges, constant vigilance around food, and the emotional weight of advocating for you...
March 25, 2026 Read More

Topics: Mental Health, Research

PWS Registry Data: Dermatology

When it comes to dermatological or skin issues in PWS, the first things that may come to mind are sensitivity to the sun due to fair skin and skin picking. However, there are a variety of additional skin-related concerns for individuals with PWS.
March 16, 2026 Read More

Topics: Research

The Global PWS Registry: Turning Lived Experience Into Better Care

Families living with Prader-Willi syndrome are changing how PWS is understood, studied, and treated.
February 24, 2026 Read More

Topics: News, Research, Parents

PWS Registry Data: 70% Report Sleep Issues In PWS

Sleep is a common challenge among people with PWS. Whether it is daytime sleepiness, getting up at all hours of the night, early waking, or another sleep-related issue, sleep challenges not only affect the individual with PWS but the entire family. T...
February 12, 2026 Read More

Topics: Research

Modafinil and Daytime Sleepiness in Prader-Willi Syndrome

Excessive daytime sleepiness (EDS) is one of those symptoms of Prader-Willi syndrome (PWS) that often does not get the attention it deserves. EDS can profoundly undermine success in older children and adults with PWS. It is hard to learn anything in ...
January 15, 2026 Read More

Topics: Therapeutic Development, Research, Research Blog, Sleep

Are GLP-1s Safe and Effective for People with PWS?

You have probably heard of GLP-1 receptor agonists (GLP-1s). You may even know someone who has successfully lost weight using one of these popular medications. But what about their safety and effectiveness for people with Prader-Willi syndrome (PWS)?
January 6, 2026 Read More

Topics: Hunger Satiety, Obesity and Energy Balance, Research, PWS People

Pitolisant for Daytime Sleepiness in PWS: New Research Findings

Families and caregivers in the Prader-Willi syndrome (PWS) community whose loved one experiences excessive daytime sleepiness (EDS) know just how challenging it can be in daily life. Data from the Global PWS Registry show that 55% of participants exp...
December 23, 2025 Read More

Topics: Research

PWS Clinical Trials Alert

FPWR maintains the latest clinical trial information so that you can stay abreast of trial opportunities. Some trials require in-person visits, while others can be completed remotely. Some trials are testing new drugs, while others are intervention (...
December 17, 2025 Read More

Topics: Research

Save the Date for FPWR’s 2026 PWS Family Conference & Workshops

Mark your calendars and join us October 9–10, 2026, as parents, caregivers, and medical professionals from across the country gather in Philadelphia, Pennsylvania for FPWR’s 2026 PWS Family Conference — a two-day event designed to connect, learn, and...
November 25, 2025 Read More

Topics: Research, Parents, Learning

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.

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Foundation for Prader-Willi Research
Phone: 888-322-5487
Email: info@fpwr.org

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Covina, CA 91723

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