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FPWR Blog

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

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 from multiple clinical trials enroll...
August 14, 2018 Read More

Topics: News

Theresa Strong Named to FDA Patient Engagement Collaborative

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 Trial...
August 2, 2018 Read More

Topics: News

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

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...
July 31, 2018 Read More

NEW Tool to Help Measure Anxiety and Distress in PWS

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...
July 20, 2018 Read More

Topics: Research

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

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, ...
July 18, 2018 Read More

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

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...
July 12, 2018 Read More

Topics: News

Interactive PWS Clinical Trial Finder Now Available!

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 ...
July 10, 2018 Read More

Topics: News

Results of Phase 2 Study Evaluating Carbetocin for PWS Published

The results of a Phase 2 clinical trial evaluating carbetocin in PWS have just been published in the journal JCI Insight. The findings of the paper, "Intranasal Carbetocin Reduces Hyperphagia In Individuals With Prader-Willi Syndrome," support the ad...
June 22, 2018 Read More

Topics: Research

New PWS Explainer Video Describes Prader-Willi Syndrome In 3 Minutes

In just 3 minutes, FPWR's new video, What Is Prader-Willi Syndrome?, explains the basics of PWS — how it occurs, some of the challenges of PWS, and promising research into treatments. Narrated by Susan Hedstrom, Executive Director of FPWR and the par...
May 31, 2018 Read More

Topics: News

About FPWR

The Foundation for Prader-Willi Research (federal tax id 31-1763110) is a nonprofit corporation with federal tax exempt status as a public charity under section 501(c)(3).

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Our Mission

The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.

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Foundation for Prader-Willi Research
Phone: 888-322-5487
Email: info@fpwr.org

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440 N Barranca Ave #3620
Covina, CA 91723

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