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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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Progress on 10 Recommendations from PWS Mental Health Research Workshop

September 12, 2018

Mental health and behavioral problems are a major challenge for individuals with Prader-Willi syndrome (PWS), with significant impacts on quality of life and independence for both the person with PWS and their family. In 2015, FPWR conducted a two-day workshop

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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

Soleno Therapeutics Receives Fast Track Designation from FDA for DCCR for Treatment of Prader-Willi Syndrome

July 31, 2018

Soleno Therapeutics has received an FDA Fast Track Designation for diazoxide choline controlled-release (DCCR) for the treatment of PWS. Soleno is currently conducting a Phase III clinical trial of DCCR for the treatment of PWS. FPWR provided partial funding for

NEW Tool to Help Measure Anxiety and Distress in PWS

July 20, 2018

This guest blog was contributed by Sara Cotter, CEO, Levo Therapeutics. When developing new medicines to treat PWS, companies need to demonstrate meaningful improvements in PWS symptoms. For growth hormone, this was relatively straightforward because changes in height are easily

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PWS Registry Data: 88% Have Received Speech Therapy [INFOGRAPHIC]

July 18, 2018

Speech requires a complex combination of cognitive processing to quickly find and combine the right words, paired with the physical process of producing sounds. Since PWS impacts a variety of pathways that contribute to speech and sound development, it is

FPWR and Zafgen Partner for Natural History Study 'PATH for PWS'

July 12, 2018

FPWR and Zafgen have partnered to execute a four-year study that will advance the understanding of natural history and medical events in people with Prader-Willi syndrome. The PATH for PWS study (Paving the way for Advances in Treatments & Health

Interactive PWS Clinical Trial Finder Now Available!

July 10, 2018

In our continued commitment to provide information on PWS clinical trials, FPWR is pleased to share our new Interactive PWS Clinical Trial Finder. The latest addition to our clinical trials information page, this interactive map allows caregivers to quickly find

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