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Our Blog

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


A right to an education?

A right to an education?

Do national laws matter? IPWSO President Tony Holland writes about the importance of education and of enshrining a right to education in national laws. At a recent Leadership ECHO® meeting the focus was on the provision of education for children with PWS. After the presentation by Larry ...
Supporting developments for people with PWS globally

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?
IPWSO supports Rare Disease Day 2021

IPWSO supports Rare Disease Day 2021

Rare Disease Day takes place on Sunday 28th February. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on peoples' lives. The campaign targets primarily the general public and also seeks to raise ...
Kate’s story

Kate’s story

Kate talks about life with PWS, what it was like growing up and what her life is like now that she lives in a group home.

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.

three adults and a child smiling

Information for

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.

Information for
Professional Caregivers

Sharing international knowledge among professional service providers throughout the world.

What is PWS?

Translated Guides

Find support in my country