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Common Medical Issues

Common Medical Issues We have collected information and resources relating to common medical issues affecting people with Prader-Willi syndrome. Please also refer to our Consensus Documents, Medical Alerts and Information for Families. Growth Hormone Therapy Mental Health Fertility, sexuality & sex hormones Gastro-intestinal problems < Back to Information for Medical Professionals International Community IPWSO was established so that PWS associations, families, clinicians and caregivers around the world could exchange information and support and have a…

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Thank you Linda!

…and sheer delight to know. She has been and I imagine always will be, a true ambassador for people with PWS. It was Linda who taught us all to use the phrase “people with PWS” rather than the label, “Prader-Willis”. Linda’s dedication and commitment to IPWSO, has made an enormous difference to so many people around the world – parents, family members, professionals and most importantly, people with PWS. We wish her the very best…

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Enjoying the holidays: tips from parents around the world

…13 years old and Antoine (pictured at the top) and Arthur, 10 year old twins both with PWS. Holiday times are great. If you have a plan, holidays are a real benefit. Our plan is: get outside a few hours every day. Go for a walk. Tell somebody where you went. If somebody joins in: great. If not: no problem. Take the silent path. In a park. Along a creek. Watch birds. If you climb…

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Countdown to European Hormone Day on 24 April 2024  

…help spread the word, online or in person, focusing on whatever topics are most relevant to your community. If you’d like to take part in your community, you’ll find a public outreach toolkit with social media materials covering endocrine-disrupting chemicals, obesity and rare endocrine diseases, as well as the 10 Recommendations mentioned above. Translations of key materials are also available in 13 European languages. Find out more and download the materials here: www.europeanhormoneday.org. #EuropeanHormoneDay #BecauseHormonesMatter…

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Growth Hormone Therapy

…below. Growth Hormone in Adults Consensus Statement Statement published in Orphanet Journal of Rare Diseases, February 2021 Further resources: Growth Charts   Growth charts: 0-36 Months To generate and report standardized growth curves for weight, length, head circumference, weight/length, and BMI for non– growth hormone–treated white infants (boys and girls) with Prader-Willi syndrome (PWS) between and 36 months of age. The goal was to monitor growth and compare data with other infants with PWS. Growth…

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Prader-Willi research

Our Clinical and Scientific Advisory Board has published a collated list of all PWS research papers published from April to June 2020….

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New PWS resources for Arabic-speakers

…يُرجى مساعدتنا على مشاركة هذه المعلومات عن طريق إعادة إرسال الوثائق إلى الأشخاص الموجودين في إطار دائرة معارفك 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 Filmed…

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Preparing for the future: when parents die

…guide. We must strive to establish consistency and reliability in the person with PWS’s life, familiarising the wider family and other carers with the person’s needs, spending quality time together, and showing unwavering support. With patience, education, and a commitment to the person’s well-being, we can navigate the intricate path of caring for a person with Prader-Willi syndrome after the passing of their parents. This article was written by IPWSO’s Famcare Board. 2023 Print Friendly…

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Can you help more families access PWS support?

…on and take for granted. Your donation of €30 / $30 will help towards the running costs of our PWS advice line. Without our advice line many families would have no one to turn to. We may not be able to solve all the problems we hear about, but we can offer information, kindness and support so that people know they are not alone. Please support our urgent advice line appeal today. Thank you! https://visufund.com/be-a-star-for-ipwso…

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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.