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Exciting New Treatment May Reduce Disruptive Behaviors in PWS

UPDATE, July 2023: We are currently contracting with potential trial sites across the US and will announce sites as they become available. Our first sites could be available as early as August/September. If you would like to join our interest list fo...

Topics: Research

Harmony Biosciences Announces Phase 3 Study of Pitolisant

Harmony Biosciences has announced plans to begin a Phase 3 study of Pitolisant for individuals with Prader-Willi syndrome ages 6 and up in the 4th quarter of 2023. This announcement is made following a positive end-of-phase 2 meeting with the FDA. Ha...

Partnership with CombinedBrain Will Establish Biorepository for PWS & SYS

The Foundation for Prader-Willi Research has partnered with COMBINEDBrain to establish a biorepository of blood and urine samples that will help speed treatments for people with PWS and other neurodevelopmental disorders. Biorepositories play a cruci...

Topics: PWS People, Volunteer, SYS

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 (no...

Topics: Research

'It’s a Beautiful Gift I Never Expected' Says SYS Hero and Mom

A special blog contribution from Roya Malaekeh. People often ask what it was like getting a diagnosis, especially since we had endured a year without one. When I got that phone call from the geneticist, it felt like a boulder was lifted off my chest ...

Topics: Stories of Hope

FPWR 2023 Family Conference - Deep Dive Workshops

You won’t want to miss these speakers at the 2023 FPWR Family Conference this October in Denver, CO. This year's conference has something for every parent traveling this PWS journey. Attend interactive workshops designed to provide practical tools an...

Topics: Parents, Adults, Children 0-3, Children 3-6

PWS Clinical Trials Panel [2022 CONFERENCE VIDEO]

In this 1-hour and 7-minute video, FPWR Executive Director Susan Hedstrom presents an overview of current and upcoming PWS clinical trials, and trial representatives provide brief presentations on specific trials.

PWS Registry Data: Dental Issues [INFOGRAPHIC]

Dental issues in PWS can result from symptoms directly related to PWS, such as low saliva production, combined with challenges that individuals with special needs may have with maintaining good oral hygiene. Here, we focus on data from the Global PWS...

Topics: Research

The Comer Family Is “Eager to Meet You” in Denver This October!

A special contribution by guest blogger Andrew Comer The 2022 FPWR Family Conference in Chicago was an important turning point for our family. Our daughter Lucy had been born only six months prior, and diagnosed with PWS a month after that. My wife S...

Topics: Parents