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FPWR Receives award from the Moriah Foundation to support the development of a Mental Health Guidebook for Prader-Willi Syndrome

December 2, 2019

The Foundation for Prader-Willi Research is excited to announce the receipt of a financial award from the Moriah Foundation which will be used to support the development of a Mental Health Guidebook for Prader-Willi Syndrome (PWS). Mental health and behavior

A Call To Action: Why PWS Clinical Trials Need to Be Full

September 10, 2019

Treatments for Prader-Willi syndrome are urgently needed. Today, we are closer than ever to the treatments for which we have been waiting, but we need all hands on deck to ensure our efforts can take us to the finish line.

Pitolisant approved for treatment of excessive daytime sleepiness in adult patients with narcolepsy

August 15, 2019

Harmony Biosciences has announced that the U.S. Food and Drug Administration has approved WAKIX® (pitolisant) for the treatment of excessive daytime sleepiness (EDS) in adult patients with narcolepsy. WAKIX, a first-in-class medication, is a selective histamine 3 (H₃) receptor antagonist/inverse

PWS Mindfulness and Meditation Trailblazer Singh To Speak at 2019 Conference

June 25, 2019

The ability to regulate emotions is an essential skill for a happy life, and for many of us this can be challenging to accomplish! When left unmanaged, high levels of stress can lead to both mental and physical ailments which

PWS Clinical Trials Consortium Meets with FDA for a Critical Path Innovation Meeting

April 25, 2019

The PWS-Clinical Trial Consortium (PWS-CTC) met with FDA on November 19th for a 90-min session, to discuss the progress made in the last three years to overcome clinical trial challenges in PWS. With an increasing number of clinical trials in

PWS Clinical Trial Consortium and FDA Hold Key Meeting This November

September 25, 2018

The PWS Clinical Trial Consortium has recently been granted the unique chance to have a Critical Path Innovation Meeting with representatives of the FDA. The meeting will take place in November in Silver Spring, Maryland. This is a unique opportunity

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Finally! We have treatments for PWS in clinical trials. How have we gotten here?

August 14, 2018

We are in an exciting time in PWS research. More clinical trials evaluating new drugs for PWS are taking place this year than in the last 10 years combined! For the first time ever, families will be able to choose

Theresa Strong Named to FDA Patient Engagement Collaborative

August 2, 2018

FPWR is thrilled to announce that Theresa Strong, our Director of Research Programs (and mom to Daniel, with PWS) has been selected to serve on the Patient Engagement Collaborative (PEC) by the U.S. Food and Drug Administration and the Clinical

Mom Urges Parents to 'Build Our Village' By Joining the PWS Registry

September 13, 2017

I'm thrilled to announce the Global PWS Registry, launched in 2015, now has more than 1,100 participants enrolled! If you haven't enrolled, please visit the registry website today to get started. If you have enrolled, please update your information in

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