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BOOKS

Early Childhood

Our Babies
24 pages. (2000). Parents of young children with PWS describe their feelings on having a baby diagnosed with PWS, and their feelings now. (Encouraging and positive)
UK

The Child with Prader-Willi Syndrome: Birth to Three
34 pages A5. (1999). The first part is written from a parent's view point, the second part by a paediatrician and other health professionals. It is intended to help parents as well as early intervention workers, physicians and care providers with advice on optimum care.
USA

Babies and Children with Prader-Willi Syndrome: a handbook for parents and carers
46 pages A4. (2001). An excellent book! Great layout, easy reading and with colour photo's. Covers about everything.
UK

Prader-Willi Syndrome and the Younger Child
24 pages A5 (1997 revised) A comprehensive introduction to PWS for "new" parents, family and care providers. Covers birth to about 12 years. Nicely written, practical and with photo's.
NZ

Directions: Help for parents of young children
38 pages A5 (1991). Written by parents and professionals. Basic information and offers guidance on many issues that arise in the years from birth to 5.
USA

The Early Years
42 pages A4. (1998). A collection of articles from "The Gathered View" regarding young children with PWS, includes stories told by parents.
USA

Nutritional Care for Infants and Toddlers with Prader-Willi Syndrome
62 pages A5 (2000). Discusses common early infant feeding problems, feeding aids, growth and nutrition for this age group. Answers to frequently asked questions.
USA

Nutrition Care for Children with Prader-Willi Syndrome: A nutrition guide for parents of children with PWS. Ages 3 to 9 years
12 pages A5. Covers calorie needs, supplements, diet planning and food management, and explains food exchange lists.
USA

Adolescence & Adults

Prader-Willi Syndrome and the Older Person
27 pages A5 (2000 revised). Information on the adolescent and adult years.
NZ

A Handbook for Parents and Carers of Adults with Prader-Willi Syndrome
44 pages A4. (1996). Covers behavior, medical, ethical and financial topics.
UK

Beyond the Veneer: a guide to the essential features of residential care and supported living for adults with Prader-Willi Syndrome
20 pages A4. (1997) For parents and care providers.
UK

Guidelines for the management of Prader-Willi Syndrome. 3rd edition
A resource directed towards care-staff and other service providers working with adults with PWS.
44 pages A5 (1998)
AUS

Nutrition for Adolescents and Adults with Prader-Willi Syndrome
24 pages A5 (1995). Covers essential diet information for families, caregivers, and residential service providers.
USA

General

My Grandchild has Prader-Willi Syndrome. Now what?
17 pages A5 (2000) Especially written for grandparents.
USA

Prader-Willi Syndrome: home, school and community
193 pages. Includes parent stories and general information .
Canada

Prader-Willi Syndrome
44 pages (in Dutch)
NL

Growing up with Prader-Willi Syndrome: the personal reflections of a mother
38 pages A4 A collection of 15 articles from "The Gathered View".
USA

Nutrition - general

Food and Health
28 pages A5. (1996). Nutritional information and food lists by weight and caloric content.
UK

Prader-Willi Syndrome: practical ideas to help with weight control
42 pages A5. Very handy, great layout with lots of illustrations
UK

Education

Prader-Willi Syndrome: a practical guide - Resource materials for teachers
85 pages A4. (1999) Very comprehensive. Covers classroom and behaviour management as well as educational techniques of three age groups: 1) preschool and primary, 2) secondary, and 3) further education.
UK

Information for School Staff Supporting the Student who has Prader-Willi Syndrome - across their Life Span
7 pages A4; Includes a cassette
USA

Educating the Child with Prader-Willi Syndrome
6 pages A4.
UK

Transition to School: for young children with special learning needs
36 pages A4. (1997). Guidelines on what is involved in the transition process to primary in NSW. Written by the Education Department.

Behaviour & Health

Growth Hormone And Prader-Willi Syndrome: a reference for families and care providers.
53 pages A4. (2001). ). Excellent and comprehensible reading for those parents contemplating GH treatment for their children. With colour photo's of children before and on GH treatment. It is also a comprehensive reference for all medical providers considering using growth hormone with children who have Prader-Willi syndrome.
USA

Behaviour Management
79 pages A4. A collection of articles from "The Gathered View" on behaviour, medications, skin picking, toilet training and social skills teaching.
USA

Behaviour Management in Prader-Willi Syndrome
12 pages A4. (1999) Short overview.
UK

Health and Medical Issues: For the individual with PWS
95 pages A4. Information and collected articles from "The Gathered View".
USA

Vision and Care of the Eyes in Prader-Willi Syndrome.
4 pages A4.
UK

Conference abstract books

2001 International Prader-Willi Syndrome Scientific Conference. Minnesota, USA

2001 International Prader-Willi Syndrome General Conference. Minnesota, USA

2002 Australasian Prader-Willi Syndrome Conference. Sydney

2000 Australasian Prader-Willi Syndrome Conference. Melbourne

1998 International Prader-Willi Syndrome Conference: scientific. Lido di Jesolo, Italy

Scientific Books & articles

Mil, E.G.A.H. 2000 Energy Metabolism in Paediatric Obesity.
Chapters 1-3 Introduction and energy expenditure in rest and when active in children and adolescents with PWS. Chapter 4 on body composition in PWS. 7 Chapters, 172 pages:

Gabriels B. 1998. Vasopressin Secretion Disorders. Chapters 4-5 are on PWS. 8 chapters, 167 pages

Prader Willi Syndrome in the New Millenium in The Endocrinologist Vol 10, no 4, Supp 1: 73 pages
To browse in the library

Review and research papers on many other aspects of PWS:

• Growth Hormone Therapy Use in PWS: Virtually complete since 1995.
• Also large collection on use of growth hormone in adults and on growth hormone secretagogues.
• Behaviour, Psychology, Sleep, Vision, Speech, Dental, Diet, Metabolism, Exercise etc. Mainly since 1995.

To browse in the library

VIDEO'S

Keeping a Balance: an introduction to Prader-Willi Syndrome
32 minutes (1999) Interviews with experts on PWS and individual stories of 8 people with PWS.
UK

To be different is alright, too: Prader-Willi's Syndrome (English subtitles)
43 minutes (1996?) Shows the life of children and adolescents of different ages: from 2 to 29 year old. Parents express their feelings. Shows therapies used and a variety of schools attended. Adolescents and adults speak themselves about their life.
NL, Belgium

1999 Australasian PWS Conference, Melbourne. A/Prof Davies: Growth Hormone; Prof Swaab:hypothalamus;( Wayne:sexual development); Dr Rowell:drugs; Mr Radler:Behaviour

1999 Australasian PWS Conference, Melbourne. Davies & Thornton: Fighting fit; (Inge: Nutrition;) King: Teeth ; (Loughnan: Exercise;) Aharna: Chiropractic; My life with PWS

1999 Australasian PWS Conference, Melbourne. (Adams: Jesse
Thompson: Music); ; Crawford: Art; Dowell: further education

2002 Australasian PWS Conference, Sydney. opening session (Puplick), keynote (Holland), workshops with Holland & Taylor

2002 Australasian PWS Conference, Sydney. Life style sessions (Kneipp, Apperley, Loughnan, Elson), PWS clinic roles & workshop

2002 Australasian PWS Conference, Sydney. Growth hormone (Dr Lee, Dr Scheermeyer); Sex hormone (Dr Steinbeck), Genetics (Dr Smith), care and sibling sessions (Hardwick, Sills & Robertson).