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 infantile refsum 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 infantile refsum disease. Following an introductory chapter, the sourcebook is organized into three parts. PART I: THE ESSENTIALS; Chapter 1. The Essentials on Infantile Refsum Disease: Guidelines; Chapter 2. Seeking Guidance; PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL; Chapter 3. Studies on Infantile Refsum Disease; Chapter 4. Books on Infantile Refsum Disease; Chapter 5. Multimedia on Infantile Refsum Disease; Chapter 6. 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; INFANTILE REFSUM DISEASE GLOSSARY; INDEX. Related topics include: Disorder of Cornification 11 (Phytanic Acid Type), DOC 11 (Phytanic Acid Type), Heredopathia Atactica Polyneuritiformis, Hypertrophic Neuropathy of Refsum, Phytanic Acid Storage Disease, Refsum Disease.

Author: ICON Health Publications
Publisher: ICON Health Publications
Illustration: N
Language: ENG
Title: The Official Parent's Sourcebook on Infantile Refsum Disease: A Revised and Updated Directory for the Internet Age
Pages: 00000 (Encrypted PDF)
On Sale: 2002-11-18
SKU-13/ISBN: 9780597831171
Category: Health & Fitness : Diseases - Genetic
Category: Medical : Pediatrics