The Official Parent's Sourcebook on Mucopolysaccharidoses
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 mucopolysaccharidoses, 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 mucopolysaccharidoses. Following an introductory chapter, the sourcebook is organized into three parts. PART I: THE ESSENTIALS; Chapter 1. The Essentials on Mucopolysaccharidoses: Guidelines; Chapter 2. Seeking Guidance; PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL; Chapter 3. Studies on Mucopolysaccharidoses; Chapter 4. Books on Mucopolysaccharidoses; Chapter 5. Multimedia on Mucopolysaccharidoses; Chapter 6. Physician Guidelines and Databases; PART III. APPENDICES; Appendix A. Researching Your Child’s Medications; Appendix B. Researching Nutrition; Appendix C. Finding Medical Libraries; Appendix D. Your Child’s Rights and Insurance; ONLINE GLOSSARIES; MUCOPOLYSACCHARIDOSES GLOSSARY; INDEX. Related topics include: Mucopolysaccharidosis type II.
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