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PraderWilliSyndrome news

Local Couple Seeking to Help Fund Cure for Rare Prader-Willi Syndrome

WPRO - Nov 11, 2016
Siena has something called Prader-Willi Syndrome (PWS), and has already faced many challenges in her life. PWS is a rare and complex genetic disorder that occurs sporadically in 1 in 15,000 births. PWS causes many complications, which include low ...

2016 Prader-Willi Syndrome (PWS)

Medgadget (blog) - Nov 25, 2016
The report provides comprehensive information on the therapeutics under development for Prader-Willi Syndrome (PWS), complete with analysis by stage of development, drug target, mechanism of action (MoA), route of administration (RoA) and molecule ...

Century Oak Inaugurated As Group Home For People With Prader-Willi Syndrome

WUFT - Nov 9, 2016
The Arc of Alachua County hosted a ribbon-cutting ceremony Tuesday morning for Century Oak, its new group home for adults with Prader-Willi syndrome (PWS). PWS is a genetic disorder that affects appetite, growth, metabolism, cognitive function and ...

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Prader Willi Syndrome books

Prader-Willi Syndrome: How Parents and Professionals Struggled and Coped and Made Genetic History

by: John Hernandez-Storr
On March 28, 1971, Fausta Deterling gave birth to a boy. Curtis was floppy and had little appetite. When he was five months old, a doctor told his parents that Curtis had Prader-Willi syndrome. He told them that when Curtis became a toddler he would develop a huge and life-long appetite. He told them Curtis would become quite obese, would not be 100 percent mentally, and would not live past his twenties. There was no cure or treatment.Fausta and her husband, Gene, did not accept this. Neither did a small band of professionals.
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Positive Winning Soul Defeating Prader-Willi Syndrome

by: Rhoda L. Ross-Williams
Positive Winning Soul is a powerful story about a family's struggles and triumphs living with Prader-Willi Synsrome (PWS). Rhoda L. Ross-Williams takes the reader on a journey of multiple medical crisis including Steven Johnson Syndrome (SJS) and miracles. Coupled with unnecessary battles with in humane for profit heath care insurers refusal to pay refusing to pay for the life saving treatment. She also had to battle a non compliment school system that refused to met her child's best interest.
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Management of Prader-Willi Syndrome

Management of Prader-Willi Syndrome brings together the contributions of professionals with considerable expertise in diagnosis and management of PWS. Clinical, social, family, and community issues are explored and management strategies identified. The text presents historical, medical, and genetic information to orient the reader. The major portion deals with pragmatic guidelines, rather than research and diagnosis, and is directed to health and educational specialists in academic, clinical, and community settings.
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Prader-Willi Syndrome: Coping with the Disease - Living with Those Involved

by: U. Eiholzer
A Karger 'Publishing Highlights 1890–2015' title
Over the past years, research into the Prader-Willi syndrome (PWS) and its treatment options has progressed enormously and new insights have greatly improved the quality of life of those affected. For many years, Urs Eiholzer has been engaged in the care of children with PWS and their families. He has published a great number of seminal scientific articles and contributions and supports a comprehensive, integrated treatment approach, taking into account both the biological and the psychological aspects of the syndrome.
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Prader Willi Syndrome videos

A Snapshot of Prader-Willi Syndrome

Composed of three other videos (with respect to their copyrights), this video serves as a quick, informative snapshot of Prader-Willi Syndrome. Target audience ...

Prader-Willi Syndrome

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Prader-Willi Syndrome

Prader-Willi syndrome is a rare genetic disorder that causes characteristics such as obesity due to an excessive appetite. A psychiatrist explains the different ...

Prader-Willi Syndrome... A Mother's Perspective

Interview with 3 mothers and their journey living with a child with Prader-Willi Syndrome. From hearing the words (Prader Willi Syndrome) for the first time to ...

Prader-Willi Syndrome - Eva's Story