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Home > About PWS > Publications


In addition to the information on this website, we have a number of additional publications for sale.

To order any of the publications below, please download and complete our order form and send with cheque/postal order to PWSA UK, Suite 4.4, Litchurch Plaza, Litchurch Lane, Derby DE24 8AA

Payment can be made by visiting our website go to “donate and pay” and choose “Donation for literature” from the dropdown menu

Our Babies (revised edition)

This is a collection of stories which we hope will give a positive uplift to those with new babies and small children who have just been given a diagnosis of PWS. The days ahead may sometimes look very bleak but, as these stories show, there are many joys to having a child with PWS.
32 pages full colour (A5)
£5.00 (first copy FREE to new parents)

Healthy Eating with Prader-Willi Syndrome

Understanding why a person with PWS needs to keep to a lower calorie diet, as well as knowing some of the basic principles of good nutrition, are crucial to helping the person maintain a healthy body weight. The first part of this book explains what is unusual about PWS and how good dietary management can help maintain a healthy weight for people with the syndrome. It includes sections on eating healthily as well as managing the food environment. In the second part there is a range of delicious, healthy, lower calorie recipes which everyone will enjoy.
54 pages full colour. ISBN: 978 0 9552433 0 1

Let’s talk about PWS

This is a 24 page workbook for children and adults with PWS with simple explanations about the syndrome and exploring what it is like to have it.
£3.00 (first copy FREE to people with PWS)

Beyond the Veneer - A guide to the essential features of residential care and supported living for adults with Prader-Willi Syndrome

This guide sets out to identify the very special needs of people with PWS, and to suggest ways in which these can best be met within a residential home or a supported living situation. The suggestions are based on practices which have proved to be most helpful in producing a good quality of life for most people with PWS, both in the UK and internationally, and are in line, as far as possible, with current health and social services thinking and practice. This updated 4th revision includes new sections on supported living and the Mental Capacity Act.
54 pages A4. ISBN 978-0-9552433-3-2

Our Way of Life - by and for people with PWS

Our Way of Life is especially for people with PWS. It explains what it is like to live with PWS by people who know, and how people with PWS and others can manage so that their lives can be positive and fulfilling. It contains real life stories and photos of people with PWS - all of whom are different, but all of whom share many of the daily challenges of living with the syndrome.
58 pages A5 with colour photos. ISBN 978-0-9552433-4-9
£4.95 (First copy FREE to people with PWS)

Management of Prader-Willi Syndrome (3rd edition) Editors: Merlin G Butler, Phillip DK Lee, Barbara Y Whitman

This revised edition addresses the medical advances of the past several years. With advances in genetic testing, confirmation of the diagnosis is now relatively easy. Insights into molecular medicine have deepened our understanding of the syndrome. New pharmaceutical treatments have made truly incredible changes in patients' lives.
The first section of this new edition explains the complex genetics of PWS and procedures for clinical and genetic diagnostic evaluations. Next, the text provides an overview of medical issues and management across the life span, focusing on growth hormone treatment and gastrointestinal issues, obesity, and body composition.
Finally, a section focuses on the neurodevelopmental, neurocognitive, and developmental aspects of PWS and the accompanying lifespan management issues, including behaviour and crisis management, educational concerns, and vocational and residential options.
While primarily a medical resource for clinicians, the book provides vital information for everyone working with people with PWS and invaluable resources for carers and families.
550 pages with b/w illustrations. ISBN 0 387 25397 1
Publisher: Springer (2006)
£52.50 Available to UK purchasers only. Overseas purchasers are advised to purchase direct from PWSA USA

Click here to download our order form