We are a registered charity (no. 284583), and the only organisation in the UK which is dedicated to supporting people with Prader-Willi syndrome (PWS),their families, carers, and the professionals who work with them.
What is PWS?
Prader-Willi syndrome is a complex genetic disorder, which is present from birth. Its main characteristics are:
- excessive appetite
- low muscle tone
- emotional instability
- immature physical development
- learning disabilities (sometimes very mild)
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)
- 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
