Prader-Willi Syndrome Association UK

Regional Support and Development Work

We would like to put home based regional support and development workers in major regions of the UK to encourage a sense of "community" in families with a child with PWS.

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Registered Charity in England and Wales (1155846)





  • Community Support & DevelopmentCommunity Support & Development
  • Health/WellbeingHealth/Wellbeing
  • OtherOther


  • Children (3-18)Children (3-18)
  • Older PeopleOlder People
  • Women & GirlsWomen & Girls
  • Young People (18-30)Young People (18-30)
  • OtherOther



Prader-Willi Syndrome (PWS) is very rare (around 2,000 people throughout the UK), and because of the dietary requirements, can be very isolating. We want to get more families together to share fun days out, arrange fundraising events, and to become part of a regional PWS community. The regions we currently wish to fund are: Scotland, London, South East England, and East Anglia. Each development worker would work part-time, 15-20 hours a week and would cost us in the region of £25,000 per year. These costs include line management, venue hire, overheads, IT equipment, and subsidies to families to attend events. We are looking for individual funding amounts for each region.