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The Safety and Efficacy of Growth Hormone (GH) Treatment in Infants with PWS; Findings from Current Research

by Mary S. Burr DNP, CPNP There is very little scientific evidence regarding the effects of early treatment with Growth Hormone (GH) in infants with PWS. Most of the information we have is anecdotal or reported case by case. The aim of this article is to review the evidence available regarding the effectiveness and safety […]

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A Comprehensive Overview of GI Issues in Prader-Willi Syndrome

Ann Scheimann, M.D., M.B.A. Dr. Scheimann is a Gastroenterologist and expert on PWS. Ann is a PWSA (USA) medical consultant on PWS Gastrointestinal (GI) issues. The prevalence of GI issues in persons with PWS of all ages is quite high.  In addition to early feeding difficulties, reflux and aspiration symptoms are frequent problems in infancy.  […]

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Recording of Recent Webinar: How Patients Can Partner to Speed Treatments for PWS, co-presented by FPWR and PWSA-USA, is now Available

  The recent webinar: How Patients Can Partner to Speed Treatments for PWS, co-presented by FPWR and PWSA-USA, is now available. This webinar provides important information about PWS clinical trials including: what to expect when participating in a clinical trial, what questions you should ask, and how to get the information you need to decide if […]

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Summary Of Active Clinical Trials For Prader-Willi Syndrome Hyperphagia

Research is one of PWSA (USA)’s Five Pillars of Support and also a vital component to the treatment of Prader-Willi syndrome.  Thanks to the work of a dedicated PWSA (USA) board member, we can share with you a compiled list of upcoming PWS drug trials. Summary of Active Clinical Trials for Prader-Willi Syndrome Hyperphagia It […]

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Family Thriving Despite Daughter’s Rare Chromosomal Disorder

GRAND FORKS, N.D. — As soon as those two lines appear on a pregnancy test, thoughts start pouring in: what will my child’s life be like? Will it be a boy or girl? Will they grow up to be an astronaut? Find the cure for cancer? What will it be like being new parents? Steph […]

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Diagnoses and characteristics of autism spectrum disorders in children with Prader-Willi syndrome

Many individuals with PWS have behaviors and tendencies that are like those seen in autism spectrum disorders (ASD). Repeating questions, the need for “sameness”, and repetitive behaviors – these things are so common in PWS and in autism.  The relationship between PWS and autism was researched recently by the PWS experts at the Vanderbilt Kennedy […]

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The Study of Pain in Adults with PWS

I would like to invite you to fill out a questionnaire for the study of pain in adults with Prader-Willi syndrome. This study of the VU University (Amsterdam) is conducted in the Netherlands, but the questionnaire is also distributed in Flanders and America. The purpose of the questionnaire is to gather experiences and knowledge about […]

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Special Announcement: Oxytocin Phase 2 Study Grant Funded

PWSA (USA) would like to thank all of the generous donors who contributed to the Association towards oxytocin research. You have made this – and future clinical trials on oxytocin possible. Phase 2 Study: Intranasal Oxytocin for Treatment of Infants with Prader-Willi Syndrome in Nutritional Phase 1a   Principal Investigator: Jennifer Miller, MD Pediatric Endocrinology, University […]

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