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Results for "Get PL-100 Exam Questions To Gain Brilliant Results ✳ Search on “ www.pdfvce.com ” for “ PL-100 ” to obtain exam materials for free download 🥜New PL-100 Test Papers"

International Advocacy

Nov 13, 2020

…PWS associations, families, clinicians and caregivers around the world could exchange information and support and have a united global voice under one umbrella. Information for Families Find useful guides, research and information to help families manage PWS. Information for Medical Professionals The latest medical and scientific research and information, plus guides into common medical issues affecting people with PWS. Information for Professional Caregivers Sharing international knowledge among professional service providers throughout the world. What is…

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I say, me too!

Aug 10, 2022

…“Me Too”. The musicians A group of professional musicians has recorded a new version of the song in celebration of IPWSO’s 30th anniversary and to mark the occasion of our 11th international conference. ​”I Say, Me Too” is the song re-imagined by Joanna Eden, singer/songwriter and pianist, accompanied by Dave Olney on bass guitar, Nick Barraclough on guitar and backing vocals from Lynne Olney. Celebrating the lives of people with PWS Thank you to the…

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Marilyn Dumont-Driscoll

Oct 23, 2020

…with patients with have childhood obesity, PWS, sleep disorders or learning disabilities. A founding member of  Academic Pediatric Association’s Continuity Clinic Research Network, the HRSA-funded Genetics Initiative in Primary Care Education Advisory Committee, the APA representative to the March of Dimes Genetics in Practice Initiative, the NIH Secretary’s Advisory Committee on Genetic Testing Panel and the Pediatric Academic Societies Executive Committee. Marilyn was an IPWSO Trustee from 2016-2019 and a co-opted IPWSO Trustee from 2019-2022….

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COVID-19 and PWS: an update

Apr 8, 2020

An understandable concern for people with PWS, their families and other carers at this time is, first, whether having PWS makes you more susceptible to catching COVID-19 and, secondly, whether people with PWS are more likely to be seriously affected if they are infected with the virus. The IPWSO Clinical and Scientific Advisory Board (CSAB), chaired by Dr Dan Driscoll, are monitoring this on IPWSO’s behalf. At present there is limited evidence to allow us to fully answer…

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PWS Growth Charts

Sep 15, 2020

…to develop syndrome-specific standardised growth curves for growth hormone–treated Prader-Willi syndrome (PWS) individuals aged to 18 years. Anthropometric growth-related measures were obtained on 171 subjects with PWS who were treated with growth hormone for at least 40% of their lifespan. They had no history of scoliosis. PWS standardised growth curves were developed for 7 percentile ranges using the LMS method for weight, height, head circumference, weight/length, and BMI along with normative 3rd, 50th, and 97th…

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Caregiver Delegate Role

Sep 15, 2020

…they have? what kind of medical support they have, i.e., is there a multidisciplinary team for PWS? what kind of education is available for the children and young adults with PWS? 4. To identify concerns about residential living, work or other topics pertinent to PWS in their country, and to bring this information to the PPCB for consideration. (This information may become topics for future Caregiver Conferences, and the Caregiver Delegates will have an opportunity…

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Talking about PWS with health professionals in Africa

Mar 1, 2023

IPWSO Vice-President, François Besnier, attended the ASPAE conference in February 2023. I was very pleased and motivated to represent IPWSO at the 14th Congress of the African Society of Pediatric and Adolescent Endocrinology which was held in Yaoundé, Cameroon from 9-10 February. The conference gathered together health professionals from African countries from across the continent from North to South Africa. At the IPWSO booth, with the help of Remy Binyet, a parent, I had many…

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Kate Woodcock

Oct 23, 2020

…lines of her research focus specifically on individuals with Prader-Willi syndrome. Kate’s work has examined factors that come together to precipitate behaviours that can be challenging for individuals with Prader-Willi syndrome, such as temper outbursts. Her team is currently engaged in work that applies this knowledge to the development of intervention strategies. For example, caregiver led behavioural support strategies, cognitive training intervention programmes, and early intervention strategies. Kate has been an IPWSO Trustee since 2019….

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Use of Growth Hormone in adults with Prader-Willi syndrome

Jan 28, 2020

…acknowledged. GH has an important role in optimisation of care in PWS, and hopefully a registration of GH for adults with PWS in more countries will follow soon. ……………………………… Charlotte has been involved in setting up a meeting in Prague from 22nd to 23rd May 2020 hosted by INfoRMEd-PWS and the European Society of Endocrinology to talk about the care of adults with PWS. This meeting is targeted towards International experts and non-experts with special…

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three adults and a child smiling

Information for
Families

Find useful guides, research and information to help families manage PWS.

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One man one lady at conference

Information for Medical Professionals

The latest medical and scientific research and information, plus guides into common medical issues affecting people with PWS.

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What is PWS?

Prader-Willi syndrome is a complex genetic condition. Various studies have shown that between 1 in 15,000 to 25,000 children are born with Prader-Willi syndrome. 

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