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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"

Maria Libura

Oct 23, 2020

Adviser Maria has been, for the past 15 years, the president of the Polish Prader-Willi Association. During this time, the association successfully cooperated with the Polish Ministry of Health and the Polish Society for Paediatric Endocrinology to establish the National PWS Treatment Programme, which was subsequently extended to adult care. She has a first-hand experience with living with PWS, being a mother of two girls, one of whom is diagnosed with this syndrome. She is…

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Addressing UHC through Rare Diseases

Dec 16, 2020

…#UHC4RareDiseases Campaign There is also a “Group of Friends of UHC”, a platform for Member States to advance Universal Health Coverage within the UN system. The Group is co-convened by Japan, Brazil, France, Ghana, Hungary, South Africa and Thailand. For a little background, please read the concept note on the Group of Friends of UHC. The meeting also shared information on the High-level Meeting on UHC held at the United Nations on 23rd September 2019….

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Agnes Hoctor

Nov 12, 2020

Communication & Membership Manager Agnes worked at Cambridge University, UK, alongside Tony Holland, and joined IPWSO initially to organise the 2019 IPWSO Conference in Cuba. She has now joined the IPWSO staff as Communication & Membership Manager. Her background is in communications and campaigns in the health and disability sectors….

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Jackie Gill

Nov 17, 2020

Parent of an adult daughter, Jackie is a past IPWSO Board member and has worked with PWSA UK for over 20 years, specialising in writing and producing information, including the UK PWS Journey, and website articles for parents, people with PWS and professional carers….

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New PWS resources available thanks to Global Genes

Oct 13, 2022

…page for all the translated guides. New translations in Arabic: Important medical facts about Prader-Willi syndrome Guides for Doctors: Infants (age 0-3) with Prader-Willi syndrome Guides for Doctors: Children (age 3-12) with Prader-Willi syndrome Guides for Doctors: Adolescents with Prader-Willi syndrome Guides for Doctors: Adults with Prader-Willi syndrome Promoting Positive Behaviour Diet and Nutrition The importance of planned, purposeful days Exercise for people with Prader-Willi syndrome New translations in Mandarin: 饮食和营养 Diet and Nutrition 有计划、有目的的饮食至关重要…

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IPWSO supports Rare Disease Day 2022

Feb 21, 2022

It’s one week until Rare Disease Day which takes place on Monday 28th February. Rare Disease Day is, “the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.” It was created in 2008 by EURORDIS along with more than 65 national alliance patient organisation partners. This year, there are over 600 events being held for Rare Disease Day with…

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Verena Gutmann

Oct 23, 2020

Chair, Famcare Board Educational Head of Department responsible for the Educational Management of 100 youngsters from 14-20 years. Also responsible for the formation of the Austrian PWS Association and chairperson for 10 years. Verena was an auditor for IPWSO before joining the board. She has a daughter with PWS living in the Regens Wagner Institution in Absberg /Bavaria/Germany. Verena was an IPWSO Trustee from 2016-2022….

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Shelly Cordner

Jan 25, 2021

Project Manager Shelly has held roles in the UK charity sector encompassing relationship management, fundraising, project delivery and online and in-person events and training management. In health charities she has worked to support people with Parkinson’s and people with Arthritis.  Shelly joined IPWSO at the start of 2021 and is responsible for managing IPWSO Project ECHO® programs as well as other online and in-person workshops, meetings and conferences.  …

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IPWSO calls for use of Growth Hormone treatment in adults

Feb 15, 2021

…in general. The fact that Growth Hormone treatment is now approved for adults with PWS in a few countries is therefore an important milestone. In the letter the researchers draw attention to the uneven global use of Growth Hormone treatment, specifically in adults with PWS, and advocate for Growth Hormone treatment to be approved internationally, not just for children, but also for adults with PWS and based only on the diagnosis of genetically confirmed PWS….

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Quick links

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Information for
Families

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

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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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