Project information

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.

The project is ongoing

Charity information: Prader-Willi Syndrome Association UK

Prader-Willi Syndrome Association UK logo
  • Need

    Need

    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.

  • Aims

    Aim 1

    To ensure people affected by PWS have somewhere to turn to for advice and guidance.

    Activities

    » A helpline open 9am – 5pm Monday to Friday providing understanding, information and advice.
    » Accurate, up to date information, literature and publications, training and consultancy and conferences.
    » Opportunities to socialise with other PWS families through family days, weekends, Christmas parties and our pen pal agency.
    » A volunteer network offering peer to peer support.


  • Impact

    Impact

    Risk

    Reporting

  • Budget

    Budget - Project Cost: £0

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  • Background

    Location

    Beneficiaries

  • Why Us?

    Why Us?

    Read more about the Charity running this project.

    People