Prader-Willi Syndrome

Prader-Willi Syndrome | help and info

help and info

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organisations

Mencap
123 Golden Lane
London EC1Y 0RT
Tel: 020 7454 0454 (general number)
Learning Disability Helpline: 0808 808 1111
E-mail: information@mencap.org.uk
Website: www.mencap.org.uk
Charity working with people with a learning disability and their families and carers, fighting for equal rights, challenging prejudice and campaigning for greater opportunities.

National Institute for Health and Clinical Excellence (NICE)
Mid City Place
71 High Holborn
London WC1V 6NA
Tel: 020 7067 5800
E-mail: nice@nice.org.uk
Website: www.nice.org.uk
Independent organisation responsible for providing national guidance on the promotion of good health and the prevention and treatment of ill health.

Prader-Willi Syndrome Association (UK)
125a London Road
Derby DE1 2QQ
Tel: 01332 365676 (9.30am-3.30pm Mon-Fri – answerphone at other times)
E-mail: admin@pwsa-uk.demon.co.uk
Website: http://pwsa.co.uk/main.php
Provides leaflets and publications on the syndrome plus telephone support, advice and advocacy. Membership also available, which offers extra benefits.

Prader-Willi Syndrome Association (USA)
Website: www.pwsausa.org/index.html
Families and professionals working together to promote and fund research, provide education, and offer support to enhance the quality of life of those impacted by Prader-Willi syndrome.

websites

Addressing the Concerns about Deaths and the Relationship to Growth Hormone
www.pwsausa.org/GHconcern.htm
The Executive Director of Prader-Willi Syndrome (USA) discusses the potentials risks of growth hormone treatment.

Anorexia Nervosa and Related Eating Disorders
www.anred.com/pw.html
Prader-Willi may on occasion be mistaken for bulimia due to the binge eating but there are significant differences that are highlighted in this article.

Contact a Family – Prada-Willi
www.cafamily.org.uk/Direct/p33.html
Charity with knowledge of rare disorders that offers support to families with disabled children.

Genetic Syndromes
www.med.umich.edu/1libr/yourchild/genetic.htm
Good clear information on what causes genetic disorders and what genetic syndromes are.

National Organisation for Rare Disorders
www.rarediseases.org/nord/research/praderwilli_syndrome
Based in Washington, USA, this organisation is dedicated to helping people with rare disorder and the website has lots of useful information.

A Prader-Willi Food Pyramid
www.pwsausa.org/syndrome/foodpyramid.htm
Easy to follow guide to daily food choices for those who need to improve their diet or lose weight.

Prader-Willi Syndrome Association (USA)
www.thearc.org/faqs/pwsynd.html
A page full of common questions and answers about the syndrome.

Prader-Willi Discussion List
http://eurordis.medicalistes.org/article1.html
From the European Organisation for Rare Diseases, this is a place where groups of people can discuss, by e-mail, a subject that concerns them, in this case, Prader-Willi syndrome.

reading

	Babies and Children with Prader-Willi Syndrome: A handbook for parents and carers by Jackie Waters (Prader-Willi Syndrome Association, 2001) Easy-to-read guide for parents and carers with accompanying photos. Get this book
	Prader-Willi Syndrome Is What I Have Not Who I Am by Janalee Heinemann Collection of writings by people with the syndrome for others with the syndrome and for all who want to understand what it is like to live with Prader-Willi. Get this book
	Prader-Willi Syndrome: Coping with the disease, living with those involved by U Eiholzer (Karger, 2005) This easy to follow book is specifically suited for non-professionals and presents the clinical picture of the syndrome, its genetic cause, state-of-the-art research results and treatment options as used in the author's out-patient clinic. Get this book
	Prader-Willi Syndrome: A medical dictionary, bibliography, and annotated research guide to internet references by ICON Health Publications (Icon Health, 2004) This is a 3-in-1 reference book comprising a complete medical dictionary, extensive lists of bibliographic citations plus information on how to use various internet resources. Get this book
	Prader-Willi Syndrome: A practical guide by Jackie Waters (David Fulton, 1999) Provides an examination of the cognitive, medical and psychological aspects of educating a child with Prader-Willi Syndrome. Practical advice is given for every part of the schooling process. The section on further education discusses the ethical issues concerned with learning skills for independent living and the potential for future employment. Get this book

(July 2006)

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