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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 clinical trial. In response to these events, we have developed a survey to help us better understand aspects contributing to PE in PWS including deep vein thrombosis (DVT’S) which can lead to PE’s.

We would like all parents or caregivers of children and adults with PWS ofall ages, living or deceased to fill out this survey (even without history of clots) because there are several variables that we need to review.

PLEASE HELP US LEARN MORE ABOUT THIS DANGEROUS CONDITION AND FILL OUT THIS SURVEY TODAY!

 

CLICK HERE to begin survey.

 

*When entering information on this survey, please make sure you answer all questions unless it states you can skip to another section. Deadline is January 20th.

If you have any questions or concerns, please contact Carolyn Loker at 1-800-926-4797
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