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FPWR Blog

United in Hope: 2025 Global Prader-Willi Syndrome Conference

We are excited to announce that the 2025 "United in Hope" conference will be held in collaboration with the International Prader-Willi Syndrome Organisation (IPWSO), the Prader-Willi Syndrome Association | USA (PWSA | USA), and the Foundation for Pra...

FDA Determines No Need For Advisory Committee Meeting At This Time

Soleno Therapeutics announced today that the U.S. Food and Drug Administration (FDA) Review Division has determined that there does not appear to be a need for an advisory committee meeting at this time for the New Drug Application (NDA) for DCCR (di...

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

Harvesting Hope: Trot With Us To Make a Difference!

This fall, join us for a heartwarming and impactful challenge: Harvesting Hope—a fun, family-friendly distance challenge that supports Prader-Willi and Schaaf-Yang syndrome research.

Topics: News

Select Sessions from our 2024 Research Symposium and Family Conference Now Available

We're excited to announce that select sessions from our recent PWS Research Symposium and Family Conference are now available to watch! This year’s event brought together leading experts, researchers, and families from around the world to explore the...

New Study Highlights the Severe Impact of COVID-19 for Individuals with PWS

As the COVID-19 pandemic continues to evolve, researchers are working hard to understand how the virus affects individuals with Prader-Willi syndrome (PWS). A recent study by FPWR Grant Recipient Dr. James Luccarelli and colleagues from the Massachus...

Topics: Research

Meet Team FPWR: A Dynamic Force Running the NYC Marathon for Research

Meet Team FPWR, a powerhouse group of eleven incredible individuals lacing up their sneakers to conquer the New York City Marathon on November 3, 2024! Each runner brings a unique story and a shared passion for supporting Prader-Willi syndrome resear...

Topics: Stories of Hope, PWS People

Webinar Provides Details on COMPASS PWS Clinical Trial

In a recent webinar, Acadia Pharmaceuticals shared details of their COMPASS-PWS Clinical trial which is currently enrolling volunteers with PWS between the ages of 5 and 30 who experience hyperphagia. This phase 3 clinical trial aims to evaluate the ...

FDA Advisory Committee to Review DCCR as Treatment for Hyperphagia in PWS

The FDA has announced its plan to conduct an Advisory Committee Meeting as part of its review of Soleno Therapeutics' DCCR New Drug Application. The FDA convenes Advisory Committees to provide independent expert advice that contributes to the agency'...

Topics: Research