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Save The Date: PWSA (USA)’s Medical and Scientific Conference

Save The Date PWSA (USA)’s 34th National Convention 29th Medical & Scientific Conference – November 16th, 2017 November 15 – 18, 2017 Caribe Royale | Orlando, Florida PWSA (USA) Medical & Scientific Conference CME’s Available for Attendees Key Note Speakers: AM Topic– Prader-Willi Syndrome Medical Overview – Advancements & Treatments Jennifer Miller, M.D. Endocrinologist Associate Professor […]

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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) ADVOCACY ALERT NETWORK SEEKS MEMBERS

The PWSA (USA) Advocacy Committee is seeking interested persons to participate in the newly created Advocacy Alert Network. Persons who join the Network will be notified by Committee members of pending legislative issues affecting PWS and be provided with a model email or letter that can be used to contact legislators regarding the issue. In […]

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Registration For PWSA (USA)’s 34th National Convention Is Now Live

PWSA (USA)’s 34th National Convention Is Now Open For Registration! November 15 – 18, 2017 Caribe Royale | Orlando, Florida We invite you to come check out our 34th National Convention registration page by clicking on the button below. With the hottest topics and the biggest names in the PWS community, you won’t want to miss out on what […]

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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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The Night we told Ryan he has Prader-Willi Syndrome

When is it the right time? At what age? At what cognitive level?  Will he even understand?  Will it make him more anxious? (Because EVERYTHING does.) Will he just perseverate on it and talk about it over and over and over?  Or will it bring relief—as in “oh, now I understand why I talk about […]

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