Prader-Willi Syndrome Association UK

Prader-Willi Syndrome Association UK

Charity information

Prader-Willi Syndrome Association UK

PWSA UK exists to improve the lives of people with PWS and all who are affected or work with them. Our vision is of a world where PWS is not a barrier to a healthy, full and productive life.

Founded 1981

  • Mission statement

    We make it our purpose to champion the rights of people with PWS and to provide information, training and support to all involved in order to support transformational approaches that improve outcomes and have an impact on well- being.

    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

    Prader-Willi Syndrome Association UK aims to:

    • To grow the Association’s capacity to deliver, across the UK: PWS awareness raising; increased understanding and support service delivery.
    • To be the number one knowledge and information hub for PWS in the UK.
    • To lobby and campaign on behalf of our members, for improved rights, resources and recognition.
    • To support and promote research into the management and alleviation of PWS.
    • To support and promote best practice in health, social care, education, residential care, employment and supported living.
  • Overview

    Established: November 1981

    Registered Charity Number: 284583

    Board members: 14

    Full time staff: 4

    Part time staff: 5

    Volunteers: 65

    Phone number: 01332 365676

    Address: Prader-willi Syndrome Association (UK) Suite 4.4 Litchurch Plaza Litchurch Lane Derby DE24 8AA

    View charity accounts on the Charity Commission website
  • Supporting children & adults with rare disease PWS

    With consistent, ongoing support people with Prader-Willi Syndrome can live fulfilled and ... More
  • Regional Support and Development Work

    We would like to put home based regional support and development workers in major regions ... More
  • Supporting People with Prader-Willi Syndrome and t...

    Offering personal one to one support to families and people with PWS in crisis - when, bec... More