The Official Parent's Sourcebook on Metachromatic Leukodystrophy
A Revised and Updated Directory for the Internet Age
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Description
This sourcebook has been created for parents who have decided to make education and Internet-based research an integral part of the treatment process. Although it gives information useful to doctors, caregivers and other health professionals, it also tells parents where and how to look for information covering virtually all topics related to metachromatic leukodystrophy, 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 metachromatic leukodystrophy. Following an introductory chapter, the sourcebook is organized into three parts. PART I: THE ESSENTIALS; Chapter 1. The Essentials on Metachromatic Leukodystrophy: Guidelines; Chapter 2. Seeking Guidance; Chapter 3. Clinical Trials and Metachromatic Leukodystrophy; PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL; Chapter 4. Studies on Metachromatic Leukodystrophy; Chapter 5. Books on Metachromatic Leukodystrophy; PART III. APPENDICES; Appendix A. Researching Your Child’s Medications; Appendix B. Finding Medical Libraries; Appendix C. Your Child’s Rights and Insurance; ONLINE GLOSSARIES; METACHROMATIC LEUKODYSTROPHY GLOSSARY; INDEX. Related topics include: Arylsulfatase A Deficiency, Cerebroside Sulfatase Deficiency, Diffuse Cerebral Sclerosis, Greenfield disease, Late-Onset Metachromatic Leukodystrophy, metachromatic brain leukodystrophy, Metachromatic Form of Diffuse Cerebral, metachromatic leukoencephalopathy, Sulfatide Lipidosis, sulfatidosis.
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