Menu

PWSA (USA)’s Webinar Series Continues

Prader-Willi Syndrome: Adulthood 101 With a presentation by Elizabeth Roof, M.A., on Monday, February 22, 2016, at 7:30 p.m., EST.  If you were unable to attend the 2015 conference, or missed this presentation while there, you will be glad to hear it now.  In Prader Willi Syndrome: Adulthood 101, Ms. Roof will present on supports […]

read more

Advocating for the Person with PWS in the Emergency Room

Dr. Dan Beaver, an ER physician with 30 years’ experience, and the parent of a child with PWS, will familiarize you with the ER process – the different kinds of staff you may meet and their roles, as well as provide you with strategies and resources you can use as you advocate for the person you […]

read more

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.   […]

read more

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 […]

read more

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 […]

read more

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 […]

read more

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 […]

read more

PWSA (USA) Supports Two New Important Studies!

Calling all fathers! A study on the role of PWS male caregivers has been approved by PWSA (USA). Dr. Leon Caldwell has been awarded a grant to do a study on the needs and issues of PWS fathers and other male caregivers. The purpose of this study is to learn about the coping and parenting […]

read more
Showing 89 to 96 of 116 results
  TOP