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Healthbridge Children’s Hospital Houston Inpatient Prader-Willi Program Termination

Dear PWS Community: For the past 5 years HealthBridge Childrens Hospital in Houston has helped children with Prader-Willi syndrome (PWS) and their families reach goals that have improved their health and overall quality of life.  HealthBridge has served numerous children over this period of time, and has made a positive and lasting impact on the […]

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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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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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2015 Holiday Tips

Dear Friends, The holidays are typically a food fest in our country – and can be a time of stress for our PWS families. With good planning, it is possible to make it a happy holiday for all. If you will be with relatives, carefully plan ahead of time and communicate the importance of food […]

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