Topics: Research
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...
May marks Prader-Willi Syndrome (PWS) Awareness Month, shedding light on the complex genetic disorder that brings various challenges to individuals. However, it's important to remember that PWS doesn't define the incredible individuals living with it...
Topics: Stories of Hope
May is PWS Awareness Month. A time to raise awareness and advance research so we may find new treatments for Prader-Willi syndrome (PWS). By coming together this month, we can amplify our impact and propel treatments for PWS forward faster. Since 201...
Topics: News
In this one hour and 8-minute video, Dr. Theresa Strong, FPWR’s Director of Research Programs, explores PWS clinical trials that are already underway or enrolling participants.
Topics: Research
Individuals with PWS often exhibit a variety of self-injurious behaviors, and one of the most common of these is skin picking. Individuals typically start with a fixation on some imperfection in the skin. This can be a rough or dry patch of skin, an ...
Topics: Research
In this 74‑minute video, Dr. Joanna Wrede, a pediatric sleep neurologist at Seattle Children’s Hospital, explains how sleep disorders are identified and treated in children with Schaaf-Yang syndrome.
Topics: Research
Harmony Biosciences has initiated its Phase 3 study of Pitolisant and is now enrolling individuals with Prader-Willi syndrome ages 6 and up who struggle with excessive daytime sleepiness. Two clinical trial sites are already open and ready to begin s...
Neuren Pharmaceuticals is now enrolling children with PWS in a phase 2 clinical trial to measure the safety and efficacy of NNZ-2591. NNZ-2591 is a novel synthetic analog of cyclic glycine-proline (cGP), a metabolite of IGF-1. NNZ-2951 regulates the ...
Topics: Clinical Trials Opportunities
Join us September 27–28 for our annual gathering of movers, shakers, thinkers, and doers at this year’s FPWR Family Conference! It's a unique opportunity to connect, learn, and grow alongside like-minded individuals who are dedicated to making a diff...
Topics: News