The Official Parent's Sourcebook On Batten 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 batten 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 batten disease. Following an introductory chapter, the sourcebook is organized into three parts. PART I: THE ESSENTIALS; Chapter 1. The Essentials on Batten Disease: Guidelines; Chapter 2. Seeking Guidance; Chapter 3. Clinical Trials and Batten Disease; PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL; Chapter 4. Studies on Batten Disease; Chapter 5. Books on Batten Disease; Chapter 6. Multimedia on Batten Disease; Chapter 7. Periodicals and News on Batten Disease; Chapter 8. Physician Guidelines and Databases; PART III. APPENDICES; Appendix A. Researching Your Child's Medications; Appendix B. Researching Alternative Medicine; Appendix C. Researching Nutrition; Appendix D. Finding Medical Libraries; Appendix E. Your Child's Rights and Insurance; ONLINE GLOSSARIES; BATTEN DISEASE GLOSSARY; INDEX. Related topics include: Batten disease, Batten-Mayou Syndrome, Batten-Spielmeyer-Vogt's Disease, Batten-Vogt Syndrome, Jansky-Bielschowsky, Kufs' disease, Lipofuscinosis, Neuronal CeroidLipofuscinosis, Juvenile Type, Spielmeyer-Vogt, Spielmeyer-Vogt Disease, Spielmeyer-Vogt-Batten Syndrome, Stengel-Batten-Mayou-Spielmeyer-Vogt-Stock Disease, Stengel's Syndrome.