Who we are and what we do

The Association was founded in 1981 by a small group of parents and a doctor with an interest in PWS. It became a registered charity on 13 May 1982. Since that time it has grown to include over 750 families and individuals affected by PWS in its membership. We also have over 500 professional members from the fields of health, social services, education, residential and community care. However, we estimate that there may be as many as 1000 more people with PWS in the UK that are not known to us.

Click here for a history of the Association.
Click here for our latest Annual Report.

How we help
We offer a range of services to help families, people with PWS, and professionals in all fields:

  • A wide range of free leaflets on PWS
  • A further range of publications for sale
  • Friendly telephone help and support
  • In-house training
  • Welfare benefits advice
  • Representation at case conferences and tribunals
  • Quarterly News magazine (members only)
  • Advocacy for people with PWS
  • Special holidays (members only)
  • Reference library
  • Access to medical experts on PWS
  • Conferences and events

Who we help
We help anyone who has PWS, their families, or anyone who works with or cares for someone who is affected by the syndrome. This includes:

  • People with PWS
  • Families and friends
  • Health professionals
  • Social workers
  • Teachers
  • Residential care workers
  • Day centre workers
  • Employers and trainers

Other activities
We also carry out a range of other activities on behalf of people with PWS and their families. These include:

  • Raising awareness about the special needs of people with PWS and their families
  • Joining with other rare disability groups on campaigning issues
  • Supporting and promoting research into PWS
  • Fundraising

Who we are?
We have a small staff team, both part-time and full-time, who work mostly from our national headquarters in Derby. We are helped by numerous volunteers throughout the UK. Our staff team comprises:

  • Chief Executive: Narinder Sharma
  • Director of Services: Jackie Waters
  • Family Support Coordinator: Jacquie Kearns
  • Development and Outreach Worker for People with PWS: Alison Woodhead (maternity cover for Kendra Rhodehouse)
  • Development Worker (Wales): Rob Kempson
  • Development Worker (N Ireland): Karen Greig
  • Finance Coordinator: David Tillett
  • Information and Resources Coordinator: Maggie Rowley
  • Finance Assistant: Matt Wiltshire
  • Database Administrator: Patricia Dziunka

FOR LATEST NEWS AND EVENTS CLICK HERE