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NBS for PWS

…on Newborn screening for Prader-Willi syndrome and other chromosome 15 abnormalities, Sunday April 3, 2022. Daniel J. Driscoll, MD, PhD, Professor of Pediatrics & Genetics, Hayward Professor of Genetics Research University of Florida College of Medicine, USA, IPWSO CSAB Chair “Overview of Newborn Screening (NBS) & Brief Discussion of Prader-Willi Syndrome” Prepared in advance for IPWSO’s Summit Meeting on Newborn screening for Prader-Willi syndrome and other chromosome 15 abnormalities, Sunday April 3, 2022. Associate Professor…

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Famcare Board

…in different sectors of the economy. She wrote the book “The Smile Thief”, published in 2017, which is the testimony of a family with a special child. She has been married for over 40 years to Mauricio Sánchez with whom she has four children; the youngest, Carlos Iván, has Prader-Willi syndrome. She has been President of the Asociación Colombiana Síndrome de Prader-Willi since 2019. María was part of the organising committee of international symposiums on…

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Advice Service

…donation. < Back to How we can help 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 people with PWS. Information…

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Supporting developments for people with PWS globally

IPWSO President, Professor Tony Holland, writes about our international advocacy work and asks for your views… IPWSO wants to hear from you – how can we best help raise awareness both nationally and internationally about the needs of people with PWS and that of their families? We have two new initiatives – the IPWSO ECHO® programme and IPWSO’s engagement with Rare Diseases International, Global Genes and other rare disease organisations. With guidance from the ECHO®…

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My double life as a Swede/Englishman with Prader-Willi syndrome!

…and have been living together for 26 years. Beside these 6 friends, I have many others, without PWS, whom I’ve known since I was born. I still have regular contact with them. We go to the cinema, concerts, musicals, and work on computers, smartphones and tablets together. They always come to my annual birthday party, where I invite them all for fruit salad, light ice-cream and alcohol-free cider. I also have a wonderful Ethiopian girl-friend!…

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Caregivers’ Conference 2024

Caregivers’ Conference 2024 6th International Prader-Willi Syndrome Caregivers’ Conference This conference took place in Berlin, Germany, 21-23 May 2024 Latest News: Our thanks to everyone who attended the conference! Conference Presentations and Posters can still be viewed on the links here. The Professional Providers and Caregivers Board of IPWSO is pleased to announce the 6th International Caregivers’ Conference in Berlin, Germany, from 21-23 May 2024. This event is in keeping with the spirit of the…

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The Jean Phillips-Martinsson Fund

The Jean Phillips-Martinsson Fund In 2020 and 2021, Jean Phillips-Martinsson, IPWSO’s founder and Honorary President, presented substantial and very generous donations to IPWSO in memory of her son, Anders, and her husband, Sven.   Jean Phillips-Martinsson Jean’s son, Anders (top picture with Jean on the right), who was diagnosed with PWS at the age of 14 in Sweden, died unexpectedly in July 2019 at the age of 49. Jean’s husband, Sven, died 11 years previously….

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Kate’s story

…with respect. Why don’t you just get to know the person on the inside?” We’re still friends to this day! In primary school, I began to put on weight and the names I was called I don’t want to repeat. I coped with the bullying through food, comfort food, meaning not so good food. Chocolate bars, doughnuts, and all that kind of thing. A lot of teenagers these days commit suicide because of bullying. I…

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We are recruiting for a Fundraising and Communications Manager (UK based)

We are looking for a Fundraising and Communications Manager to join our team. Remote working (must be UK based) £31,000 per annum pro rata (£16,534) Part-time (20 hours per week) Contract (12 months) Closing date is 12 January 2024 at 23:30 (UK time) We’re looking for a talented and motivated Fundraising and Communications Manager who can effectively convey the life-changing impact of our work, motivate our community to donate and fundraise to support our work,…

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Quick links

three adults and a child smiling

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.