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Prader-Willi syndrome is a complicated genetic disorder affecting 1:20,000 people around the world. Born with a small piece of genetic material missing, the baby will appear floppy, difficult to feed and may struggle to survive. As the child grows, issues around over-eating and behavioural challenges start to appear. Without good management, health may become compromised. We have teams of specialists who can help. Prader-Willi syndrome is not curable, but it certainly can be well-managed resulting in a good, productive life.
IPWSO
Who are we? What do we do?
We support families where there is a child or adult with Prader-Willi syndrome. We provide information and support to professionals who work with or care for those with the syndrome.
We have a Clinical & Scientific Advisory Board, a Family Care Board, a Professional Provider & Caregiver Board, and a panel of expert advisers.
We have over 100 country members with professional and parent delegates and can put you in touch with any one of these. We offer on-line consultation, free diagnosis in our laboratory in Italy, and parent-to-parent support.
If you need us, we are here.
Upcoming Events
2019 IPWSO ConferenceWed, Nov 13Cojimar Conference Centre
2018 Asia Pacific PWS ConferenceFri, Oct 19Mercure Brisbane
2018 PWS Caregivers' ConferenceTue, Aug 28Fürstenried Palace
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