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Porphyrias
- Genetics Home Reference: Porphyria - Gives definition, prevalence, related genes, inheritance, diagnosis, other names, related information, and glossary.
- Genome.gov: Learning About Porphyria - Contains description, signs and symptoms, diagnosis, treatment, heredity, triggers, classification, cutaneous and acute types, research, and additional resources.
- MayoClinic: Porphyria - Overview covers causes, symptoms, and treatment of these disorders involving the substance heme.
- NDDIC: Porphyria - Furnishes definition, types and affected enzyme, causes, symptoms, diagnostic methods, treatment options, basic facts, and research information.
- Medscape: Acute Intermittent Porphyria - Professional information includes background, epidemiology, etiology, presentation, diagnosis, workup, treatment, medication options, and follow-up guidelines.
- Orpha.net: Cutaneous Porphyrias - Emergent care recommendations include condition synonyms, definition, and pre-hospital and hospital emergency guidelines. [PDF].
- Acute Hepatic Porphyria Neuro-visceral Crisis - Orpha.net offers synonyms, definition, and recommendations for pre-hospital and hospital emergency care.
- Erythropoietic Protoporphyria Research and Education Fund - Brigham and Women's Hospital discusses this support group, and provides educational materials and newsletter information.
- The Drug Database for Acute Porphyria - Features drug and safety information for patients in France, United Kingdom, Norway, and Sweden. Sponsored by the Norwegian Porphyria Center (NAPOS).
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Organizations
- American Porphyria Foundation - Serves to enhance public awareness of porphyrias, educate, support research, and act as advocate. Includes news, research, registry, and drug information.
- Cure Porphyria Organization - Volunteer organization shares history, mission, services, and support group.
- European Porphyria Network (EPNET) - Works to improve diagnosis and treatment of porphyrias, with history, goals, news, and information for patients and healthcare professionals.
- The Porphyrias Consortium - Collaborative seeks to improve diagnosis, treatment, and prevention of these conditions. Includes patient and professional information, news, events, and history.
- British Porphyria Association - UK volunteer-run charity discusses porphyrias, news and events, coping tips, publications, and related information.
- Porphyria Association - Australian organization reviews what it is, why porphyria is studied, testing, safe and unsafe drugs, treatment anecdotes, and latest news.
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