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IPWSO supports Rare Disease Day 2022

IPWSO supports Rare Disease Day 2022

It’s one week until Rare Disease Day which takes place on Monday 28th February. Rare Disease Day is, “the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living...
PWS in Africa

PWS in Africa

Earlier this month we held a Zoom meeting to bring together the PWS community in Africa. The purpose of the meeting was to share information, create new links and to develop a better understanding of the needs of families living on the continent. IPWSO currently has...
The reality of life with PWS, one family’s story

The reality of life with PWS, one family’s story

Lauren’s story has not been an easy one – on Lauren – or her family. Her mum Joanne told us more… Lauren is a twin – the youngest of five children.  From Lauren’s diagnosis, at four months, our family threw ourselves into supporting...