Overview

This sourcebook has been created for patients 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 patients where and how to look for information covering virtually all topics related to porphyria, 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 porphyria. Following an introductory chapter, the sourcebook is organized into three parts. PART I: THE ESSENTIALS; Chapter 1. The Essentials on Porphyria: Guidelines; Chapter 2. Seeking Guidance; Chapter 3. Clinical Trials and Porphyria; PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL; Chapter 4. Studies on Porphyria; Chapter 5. Books on Porphyria; Chapter 6. Physician Guidelines and Databases; Chapter 7. Dissertations on Porphyria; PART III. APPENDICES; Appendix A. Researching Your Medications; Appendix B. Researching Alternative Medicine; Appendix C. Researching Nutrition; Appendix D. Finding Medical Libraries; Appendix E. Your Rights and Insurance; ONLINE GLOSSARIES; PORPHYRIA GLOSSARY; INDEX. Related topics include: Acute intermittent porphyria, Congenital erythropoietic porphyria, Congenital Porphyria, Delta-aminolevulinic aciduria, Erythropoietic protoporphyria, Guenther Porphyria, G]nther's disease, Hepatoerythropoietic porphyria, Hereditary coproporphyria, Mixed HepaticPorphyria, Porphyria - hepatic, Porphyria Cutanea Tarda Hereditaria, Porphyria Cutanea Tarda Symptomatica, Porphyria Hepatica, Variegate, Porphyria, ALA-D Type, Porphyria, Swedish Type, Porphyriam Acute Intermittent, Pyrroloporphyria, South African Genetic Porphyria, South African porphyria.

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