The Official Parent's Sourcebook On Sandhoff 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 sandhoff 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 sandhoff disease. Following an introductory chapter, the sourcebook is organized into three parts. PART I: THE ESSENTIALS; Chapter 1. The Essentials on Sandhoff Disease: Guidelines; Chapter 2. Seeking Guidance; Chapter 3. Clinical Trials and Sandhoff Disease; PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL; Chapter 4. Studies on Sandhoff Disease; Chapter 5. Books on Sandhoff Disease; Chapter 6. Multimedia on Sandhoff 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; SANDHOFF DISEASE GLOSSARY; INDEX. Related topics include: Gangliosidosis Beta Hexosaminidase B Defeciency, Gangliosidosis GM2 Type 2.