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Two New Research Studies

If you live in the Indianapolis area and have a child with PWS between the ages of 3 and 11 years old, you may be eligible for one of these very interesting studies on remote education for PWS. Please read the two attached documents.   The PRETEND (Parent-focused Remote Education to Enhance Development) – Research […]

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Update: Oxytocin Phase 2 Trial

It has been nearly one year since we learned of the initial potential of oxytocin and PWSA (USA) began raising funds for the phase 2 clinical trial. This trial will provide us a greater understanding of the potential benefits, appropriate dosage needed, and additional vital information. The phase 1 study results were very positive and […]

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Telehealth Intervention Research-Case Western Reserve University

We are currently recruiting children between the ages of 3 and 11 with PWS and their caregivers for two intervention studies. These play-based interventions are delivered via telehealth (webcam chatting). Our research team will be in the NYC area (Queens) on May 15-16 to enroll families. Study information can be found in the attached fliers. […]

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Exciting New $10,000 Match for Oxytocin

In honor of PWS Awareness Month in May, the Prader-Willi California Foundation has initiated another challenge to raise funds to support the Oxytocin Phase 2 Study! Help us raise just $10,000 and PWCF will match it with another $10,000! That’s $20,000 more to ensure the Oxytocin Phase 2 Study progresses! We are grateful to PWCF […]

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A Massive PWS Awareness Campaign for Geneticists

PWSA (USA) had an awareness booth at the American College of Medical Genetics (ACMG) national meeting in Tampa Florida, March 8-12 2016. During this conference they had the first-ever symposium on a single syndrome (Prader-Willi syndrome) and had approximately 2,000 geneticists and genetic counselors attending. The symposium lasted 2 ½ hours with five speakers on PWS. What huge […]

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Research Announcement: Report on the Zafgen Meetings

Due to the results of the phase 3 clinical trial on the Zafgen drug beloranib, a meeting was recently held in Miami to review the data and meet with thrombosis experts. This was followed up by a meeting with PWS caregivers, many of whom had children on the clinical trial. As reported in the webinar […]

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ZAFGEN’S PIVOTAL PHASE 3 TRIAL OF BELORANIB IN PRADER-WILLI SYNDROME ACHIEVES CO-PRIMARY EFFICACY ENDPOINTS

Zafgen has released the results of the Phase 3 clinical trial of Beloranib in PWS (the “bestPWS” study). Note that PWSA (USA) and FPWR are planning a joint webinar in the next few days to review the findings and implications of the trial with the PWS community – more details will be available soon.   […]

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