Information and Advice

Our teams are here to help you and have a huge amount of experience in guiding and advising social workers and families with loved ones who have Prader-Willi Syndrome (PWS). We’re very happy to help with anything from straightforward questions through to complex issues.  We have developed some supporting materials which can be downloaded below including; Hints and Tips on how to manage Behaviour associated with PWS, a Medical Alerts Brochure which is a vital companion for family, healthcare and medical professionals and an easy read guide to our services for people with additional learning disabilities.

It’s also important to remember that there are many respected and trusted organisations out there in the field who are also great sources of help and advice and we’ve included a selection below.  We have close links with the Prader-Willi Syndrome Association (PWSA) supporting their fundraising initiatives and member events and also support research projects by the Foundation for Prader-Will Research.

To view our case studies of parents journey’s of raising a child with PWS   CLICK HERE

Helping you to get the advice and support you need

Prader-Willi Syndrome Association UK

PWSA UK provides support, mediation and help, a website with everything you need to know about PWS, a programme of family events, training, conferences and funds research.


Foundation for Prader-Willi Research

The Foundation for Prader-Willi Research was established in 2003 by a small group of parents who saw the need to foster research that would help their children with Prader-Willi syndrome lead more healthy and fulfilling lives.


Prader-Willi Syndrome Association (USA)

PWSA (USA) was organised in 1975 to provide support for individuals, families, professionals and organisations and to be a resource for education and information about Prader-Willi syndrome