Books on Metabolic, Mitochondrial & Genetic Disorders
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Caldwell, Mary Lou
Trade Cloth, Springer, 1988 ISBN: 0387966994
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Eiholzer, Urs
Trade Cloth, Karger, 2003 ISBN: 3805575742
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Eiholzer, Urs
Trade Cloth, Karger, 2001 ISBN: 3805572565
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Greenswag, Louis
Trade Cloth, Springer, 1995 ISBN: 0387943730
MANAGEMENT OF PRADER-WILLI SYNDROME brings together the contributions of professionals with considerable expertise in diagnosis and management. Clinical, social, family, and community issues are explored and management strategies are identified. The text presents historical, medical and genetic information to orient the reader. The major portion deals with pragmatic guidelines, rather than research and diagnosis, and is directed to health educational specialists in academic, clinical and community settings. This manual is endorsed by The Prader-Willi Syndrome Association, which is recognized world-wide.
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Griffin, Elizabeth
Trade Paper, Emerald, 2004 ISBN: 1932096167
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Hagerman, Randi Jenssen; Hagerman, Paul J.
Trade Paper, Johns Hopkins, 2002 ISBN: 0801868440
Fragile X syndrome is the most common inherited form of mental retardation. Now substantially revised and updated, this acclaimed book discusses the clinical approach to diagnosing the disorder, supported by the latest research in epidemiology, molecular biology and genetics, and neuropsychology. It also presents information on treatment: genetic counseling, pharmacotherapy, intervention, and gene therapy.
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Icon Health Publications
Trade Paper, Icon, 2003 ISBN: 0597835527
In March 2001, the National Institutes of Health issued the following warning: 'The number of Web sites offering health-related resources grows every day. Many sites provide valuable information, while others may have information that is unreliable or misleading.' Furthermore, because of the rapid increase in Internet-based information, many hours can be wasted searching, selecting, and printing.This book was created for medical professionals, students, and members of the general public who want to conduct medical research using the most advanced tools available and spending the least amount of time doing so.
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Icon Health Publications
Trade Paper, Icon, 2005 ISBN: 0497009382
This book has been created for parents who have decided to make education and research an integral part of the treatment process. Although it also gives information useful to doctors, caregivers and other health professionals, it tells parents where and how to look for information covering virtually all topics related to angelman syndrome (also Happy Puppet Syndrome), from the essentials to the most advanced areas of research. The title of this book includes the word official. This reflects the fact that the sourcebook draws from public, academic, government, and peer-reviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on angelman syndrome. Given parents' increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-of-charge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard-copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. In addition to extensive references accessible via the Internet, chapters include glossaries of technical or uncommon terms.
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Saunders, Suzanne
Trade Paper, Taylor and Francis, 2001 ISBN: 1853465364
Fragile X Syndrome is thought to be the most common inherited cause of learning difficulties. However many people have never heard of it and those who have, including many of the professionals who work with those affected by it, have little knowledge or understanding of the condition. This book brings up to date research with information and advice from teachers who are discovering, first hand, the best ways of educating children with Fragile X. It is much needed support and advice that will help teachers to understand the child with Fragile X and encourage maximum educational progress. While the book is aimed at teachers, it is also an excellent resource for parents, therapists and any professional working with a child who has Fragile X.
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Waters, Jackie
Trade Paper, Taylor & Francis, 0 ISBN: 185346614X
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, from classroom management to helping the child with difficult lessons such as maths. The section on further education discusses the ethical issues concerned with learning skills for independent living and the potential for future employment.
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Weber, Jayne Dixon
Trade Paper, Woodbine, 2000 ISBN: 0933149778
Fragile X syndrome is believed to be the most common genetic cause of mental retardation, even more common than Down syndrome. It can result in a wide range of developmental delays, learning disabilities, and physical characteristics-which all tend to be more pronounced in boys than in girls. At last, there is a comprehensive book on fragile X syndrome for parents. The first and only book of its kind, Children with Fragile X Syndrome provides a complete, sensitive introduction to fragile X syndrome, an inherited, genetic condition caused by a mutation on the X chromosome. This new guide is written by renowned professionals and experienced parents, who offer an in-depth look at the issues and concerns affecting children and their families. It covers: diagnosis; parental emotions; therapies and medications; development; early intervention; education; daily care; legal rights; and advocacy.
With recent breakthroughs in research and effective treatments, therapies, and educational strategies, the future of children with fragile X syndrome is more promising than ever. Now parents and families have this indispensable guide as a source of up-to-date information, answers to their questions, and support from people who know about the challenges of raising a child with fragile X syndrome.
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Whittington, Joyce; Holland, Tony
Trade Cloth, Cambridge, 2004 ISBN: 0521840295
Prader-Willi Syndrome (PWS) is associated with an assortment of physical, behavioral and cognitive abnormalities that create a broad range of interdisciplinary care needs. Joyce Whittington and Tony Holland identify and integrate the latest findings on managing the complex medical, nutritional, psychological, educational, social and therapeutic needs of people with PWS. Both have been involved in the Cambridge PWS study--the largest of the cohort studies of PWS--which provides the basis of this book.
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