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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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Introducing PWSA (USA)’s Phone App!

We are proud to announce our free PWSA (USA) phone app is now live and available on all mobile devices! In today’s world, the way we communicate and learn is through our mobile devices. We search, read, send emails, play and even work while using these devices. It has become a part of us. This […]

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PWSA (USA) and Shriner Hospital Partnership

I am so pleased and privileged to announce the new partnership between PWSA (USA) and Shriner’s Hospitals for Children.  This relationship is exciting and, indeed, hopeful. During the 2015 PWSA (USA) National Conference I was fortunate to be introduced to Ms. Cheryl Stauss, former First Lady of Shriner’s International.  Cheryl served as First Lady of […]

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Help Us Learn More: Survey on Dangerous Condition in PWS

Survey: Vascular Blood Clots, Deep Vein Thrombosis (DVT) and/or Thrombosis in Prader-Willi Syndrome Our recent review of causes of death at PWSA (USA) has increased our awareness of the risk of death due to blood clots to the lungs/ pulmonary embolism’s(PE’s) in Prader-Willi syndrome. Additionally, there have been two PE sudden deaths during a recent […]

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PWSA (USA) Announces A New Service For Our Members!

Introducing Our New Webinar Series It has been two months since our PWSA (USA) National conference in Orlando and we have heard from so many of you regarding the excellent quality and quantity of the presentations. We are so glad you enjoyed it and have been looking for a way to expand and share the […]

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