Events and Fundraisers
Thank you to everyone who attended this year's Virtual National Convention! Session Recordings are NOW AVAILABLE. Click here to watch.
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Latest News
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...
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...
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...