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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Two Research Studies Looking for Participants

Hello from the PRETEND/Telehealth team at Case Western Reserve University! We are excited to say that we are gearing up for another enrollment trip for our ongoing studies on Prader-Willi syndrome, this time in San Antonio, TX. We will be there from Wednesday March 8 through Saturday March 11.We are recruiting families with children with PWS 3-11 years […]

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PWSA (USA) approves grant: Profiling of the gut microbiome in children with PWS

Profiling of the gut microbiome in children with PWS Principal Investigator – Andrea M Haqq, MD, MHS, FRCP University of Alberta, Canada   ABSTRACT Individuals with a genetic condition called Prader-Willi Syndrome (PWS) are at risk for development of obesity at a young age. Children with PWS often have a very high food intake because […]

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PWSA (USA) Approves Grant

We are pleased to announce that PWSA (USA) has approved the funding of an important grant: The Effect Of Growth Hormone Substitution On Sleep Disordered Breathing In Young Children With Prader-Willi Syndrome. The researchers have committed that the results will be in a report that could be helpful with physicians and private/ public insurance companies. […]

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Please Participate in Research on PWS Caregiver Stress

I would like to invite you to participate in a research study on the ‘Relationship between caring for individuals diagnosed with Prader-Willi syndrome (PWS) and caregiver stress’. The results will provide vital information to caregivers, service providers, and policy makers on strategies and supports needed in the care of individuals with PWS. The survey will […]

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Exciting News on Carbetocin for PWS!

Sara Cotter, mom to a child with Prader-Willi syndrome (PWS), has formed a company dedicated to advancing treatments for PWS and related disorders. The company is called Levo Therapeutics ( Sara has years of experience in the pharmaceutical industry, most recently as an analyst with UBS. She recently left her job to pursue the leadership […]

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