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Annual Reports

…Annual Report 2016 Annual Report 2015   < Back to About Us International Community IPWSO was established so that 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…

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Volunteer

…and return by 14 October 2024. Other ways to get involved There are many ways to get involved with IPWSO’s work from joining our Trustees or Boards to helping with a project or fundraising. We also have opportunities to volunteer at our conferences and events. If you would like to use your skills to support us please get in touch! Email office@ipwso.org. < Back to Get Involved < Back to Get Involved International Community IPWSO…

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Our 10th International Conference, Cuba 2019

Cuba, 2019 10th International Prader-Willi Syndrome Conference Havana, 13-17 November, 2019 The local hosts for the event were the Cuban Society of Human Genetics (SOCUGEN). This was IPWSO’s 10th international Prader-Willi syndrome conference. We hold these meetings every 3 years, each time in a different country. The conference was divided into four streams: Clinical and Scientific, Parent and Family, Professional Providers and Caregivers, and Activities for People with PWS. This time, significantly, our conference was…

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Conference Posters

Conference Posters We’re delighted to feature 8 posters as part of the Caregivers’ Conference. Sharing research, successes, challenges, and experiences with delegates greatly enhances the wealth of knowledge exchanged at the event. For those who can’t attend, we’re pleased to make these available online. Delegates can view them in-person in Berlin. Thank you to all of our poster presenters. “Caregivers Work” Outline between current state and future perspectives Cornelia Anzengruber, Austria Analysis of the relationship…

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Attending the PWSA | USA National Convention

IPWSO President Tony Holland recently attended and spoke at the PWSA | USA National Convention in Florida, USA: The PWSA | USA National Conventions are always special occasions, and I was delighted to be able to participate in their 2023 event. PWSA | USA was one of the first National PWS Associations to be established and it was a founder member of IPWSO. Susie Cassidy and the late Pam Eisen, both from the US, are…

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Professional Providers Abstract Submission Form

…closing date is 5 November 2024 and you will be notified of the outcome by 15 November 2024. About you Name(Required) Prefix TitleDr.MissMr.Mrs.Ms.Prof.Rev. First Middle Last Email(Required) Enter Email Confirm Email Mobile Phone Number(Required) Name of Organisation / Institution / University(Required) Organisation Address(Required) Address Line 1 Address Line 2 City County / State / Region ZIP / Postal Code Country AfghanistanAlbaniaAlgeriaAmerican SamoaAndorraAngolaAnguillaAntarcticaAntigua and BarbudaArgentinaArmeniaArubaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBelarusBelgiumBelizeBeninBermudaBhutanBoliviaBonaire, Sint Eustatius and SabaBosnia and HerzegovinaBotswanaBouvet IslandBrazilBritish Indian Ocean TerritoryBrunei DarussalamBulgariaBurkina…

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Helping carers to understand PWS: Kate’s story

…Prader-Willi can live a more active, quality life. Therefore, they will be able to live a lot longer. Hello, my name is Katherine. I am a 31 year old-female, living with a serious and severe, life-threatening eating disorder condition called Prader-Willi syndrome. It is very hard to live with Prader-Willi syndrome. There is no cure for it yet! However, one day in the future maybe scientific researchers will come up with a cure, or a…

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New funding for small PWS projects 2024

…at least 6 months after the project has concluded to discuss the project’s impact and what, if any, projects are planned to build on the impact/knowledge gained. Priority will be given to applications from: underserved countries countries where there is little awareness of PWS individuals/groups that struggle to access or develop services for people with PWS in that country individuals/groups who have not previously received funding from IPWSO individuals/groups who have previously supported people with…

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New funding for small PWS projects 2024

…at least 6 months after the project has concluded to discuss the project’s impact and what, if any, projects are planned to build on the impact/knowledge gained. Priority will be given to applications from: underserved countries countries where there is little awareness of PWS individuals/groups that struggle to access or develop services for people with PWS in that country individuals/groups who have not previously received funding from IPWSO individuals/groups who have previously supported people with…

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Quick links

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Information for
Families

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

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.

young child in a yellow dinosaur jumper

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.