The Official Parent's Sourcebook On Tay-sachs Disease: A Revised And Updated Directory For The Internet Age

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 tay-sachs disease, 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 tay-sachs disease. Following an introductory chapter, the sourcebook is organized into three parts. PART I: THE ESSENTIALS; Chapter 1. The Essentials on Tay-Sachs Disease: Guidelines; Chapter 2. Seeking Guidance; PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL; Chapter 3. Studies on Tay-Sachs Disease; Chapter 4. Books on Tay-Sachs Disease; Chapter 5. Multimedia on Tay-Sachs Disease; 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; TAY-SACHS DISEASE GLOSSARY; INDEX. Related topics include: Amaurotic Familial Idiocy, Amaurotic Familial Infantile Idiocy, Cerebromacular Degeneration, GM2 Gangliosidosis, Type 1, Hexoaminidase Alpha-Subunit Deficiency (Variant B), Infantile Cerebral Ganglioside, Infantile Sipoidosis GM-2 Gangliosideosis (Type S), Lipidosis, ganglioside, infantile, Sphingolipidosis, Tay-Sachs.