Tag Archives: PWS Best Practices Guidelines

Joe’s Mission for Prader-Willi Syndrome

On September 11, 2012, my baby cousin Siena was born. Shortly after, Siena was diagnosed with Prader Willi Syndrome (PWS), a rare genetic disorder that occurs in only 1 of 15,000 births. PWS typically causes low muscle tone, short stature, … Continue reading

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“When Your Baby Is In The Hospital NICU” New Resource

A new resource from Prader-Willi Syndrome Association (USA) for families who have just received a diagnosis and have a baby in the NICU We are very pleased to share with you this wonderful publication that will be a tremendous resource … Continue reading

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Evan’s Take: The Lehigh University Special Education Law Symposium: Report 1

Prepared by Evan Farrar, M.A., PWSA (USA) Family Support Counselor Last week I represented PWSA (USA) and the PWS community at the Special Education Law Symposium sponsored by the College of Education at Lehigh University in Bethlehem, PA.  http://coe.lehigh.edu/law Participants … Continue reading

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PWS Best Practice Guidelines Now Available!

In many ways, creating useful resources to support the quality of life and care of people with Prader-Willi syndrome (PWS) is one of the most important ongoing tasks of PWSA (USA).  Visitors to our office are often impressed by the size … Continue reading

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