Prader-Willi Syndrome Association UK

Supporting children & adults with rare disease PWS

With consistent, ongoing support people with Prader-Willi Syndrome can live fulfilled and happy lives. PWSA UK provides a wealth of information to children and adults with PWS and those who care for them. This includes literature, personal support in crisis, advocacy, and training for professionals.

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Registered Charity in England and Wales (1155846)

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    Helping

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Situation

People affected by PWS face challenges every day. Although too weak to feed as a baby, children with PWS grow to have an insatiable appetite, and never physically feel full. But because their bodies can't convert fat to muscle efficiently, they have to be on a strict diet for life or they will suffer from life-threatening obesity. They have some form of learning disability, challenging behaviour and emotional instability. They are unable to have children, and will struggle to live independently.

Solution

PWSA UK the only organisation in the UK dedicated to supporting those affected by the syndrome. We provide a range of services including a telephone help line offering support and advice; a wide range of information and publications; training and conferences and a programme of family events to enable people affected by PWS to meet up, to access peer to peer support and stop the sense of isolation felt by children and their families living with a rare disease.