Our Blog

Covering issues, stories and the latest news regarding Prader-Willi syndrome.

We are deeply saddened to share the news of the passing of Katherine (Kate) Towers, who died on 1 July 2026, aged 49. Kate was a valued member of the community, known for her warmth, determination and passionate advocacy for people with PWS. Through sharing her own experiences, speaking at ...

Ideas and suggestions from people with PWS regarding leisure, relationships and partnerships, and living arrangements.

16 September 2026

This blog presents the work of a group of adults with PWS in Germany. Through regular discussions on topics such as leisure, relationships, and work, they share their experiences and recommendations for a more inclusive and self-determined life. We are a group of 12 to 16 participants, women ...

PWS Competence Centres Network: Building stronger PWS support across German-speaking countries

27 May 2026

Supporting people with PWS requires collaboration, shared expertise, and ongoing conversations between professionals, families, and people with PWS themselves. Across the German-speaking countries, a new and inspiring network of PWS Competence Centres is helping to support this. Under the ...

Vaccination in children: What advice can we give to the PWS community?

23 April 2026

Our recent consultation meeting brought together PWS Associations and key stakeholders from several countries to discuss vaccination, with a focus on children and adults with PWS and other disabilities. The session featured two expert speakers from University College London, Great Ormond Street

A look at current treatments for hyperphagia in PWS

20 February 2026

On behalf of our Research and Clinical Trials Committee, Tony Holland, President Emeritus, shares reflections on recent progress and ongoing challenges in the development of treatments for hyperphagia in people with Prader-Willi syndrome. In March 2025, the USA Food and Drug Administration ...

A Father’s Journey: Turning Personal Challenges into Community Strength

9 December 2025

A Personal Reflection by Salman Shaban, Qatar When my daughter, Soha Shaban, was diagnosed with Prader–Willi Syndrome in 2011 soon after her birth, my world shifted in ways I never expected. What began as a journey filled with uncertainty gradually transformed into one of resilience, patience, ...

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.

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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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Information for
Professional Caregivers

Sharing international knowledge among professional service providers throughout the world.

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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 and it affects all races and both sexes equally.

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Free Genetic Screening

If you suspect your patient has Prader-Willi syndrome, based on the clinical signs and symptoms, but are unable to access testing in your country, then you may be able to access free genetic screening.

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Find support in my country

We have contacts in many countries and regions around the world.

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Our Blog

Tribute to Kate Towers

Ideas and suggestions from people with PWS regarding leisure, relationships and partnerships, and living arrangements.

PWS Competence Centres Network: Building stronger PWS support across German-speaking countries

Vaccination in children: What advice can we give to the PWS community?

A look at current treatments for hyperphagia in PWS