Porphyriafoundation.org

Diet Information for All Porphyrias

WEBThe main dietary advice for persons with Porphyria Cutanea Tarda is to avoid all alcohol in any form. In addition, adherence to a low iron diet with avoidance of any medicinal iron …

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URL: https://porphyriafoundation.org/for-patients/diet-and-nutrition/diet-information-for-all-porphyrias/

Acute Intermittent Porphyria (AIP)

WEBAcute Intermittent Porphyria (AIP) Acute Intermittent Porphyria (AIP) is a rare metabolic disorder that is characterized by deficiency of the enzyme hydroxymethylbilane synthase …

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SCENESSE® for Erythropoietic Protoporphyria

WEBSCENESSE ® is a prescription medication that contains the active substance afamelanotide. Afamelanotide is used to increase tolerance to the sun and light in adults …

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Variegate Porphyria (VP)

WEBVariegate Porphyria is a rare genetic metabolic disorder characterized by deficient function of the enzyme protoporphyrinogen oxidase (PPO or PPOX). This deficiency is caused …

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Erythropoietic Protoporphyria (EPP) and X-Linked …

WEBThank you all for attending EPP Patient Day on March 23, 2023, presented by the APF and the Canadian Association for Porphyria, featuring Porphyria Expert Dr. Karl Saardi with …

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Basic Dietary Information

WEBInclude fruits, vegetables and whole-grain cereal products in the daily diet, especially citrus fruits and carotene-rich and cabbage family vegetables. Avoid high-dose supplements of …

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Hereditary Coproporphyria (HCP)

WEBHereditary Coproporphyria (HCP) is a rare metabolic disorder characterized by deficiency of the enzyme coproporphyrinogen oxidase (CPOX). This enzyme deficiency results in the …

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Additional Resources

WEBThe APF promotes treating your health with the respect it deserves, by looking to reliable sources for your medical information. The experts on our Scientific Advisory Board …

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Frequently Asked Questions (FAQ)

WEBThere are Porphyria experts in the US and outside the US, including the Porphyria Centers in this Physicians Consortium. Information about other experts can be obtained by …

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Types of Porphyria

WEBCONTACT INFO. 4502 Cortez Rd. W Suite 102 Bradenton, FL 34210. 301-347-7166. Toll free: 866-APF-3635. [email protected]

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Porphyria Experts and Treating Physicians

WEBCONTACT INFO. 4502 Cortez Rd. W Suite 102 Bradenton, FL 34210. 301-347-7166. Toll free: 866-APF-3635. [email protected]

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Meet Dr. Karl Anderson at the Patient Education Meeting

WEBCONTACT INFO. 4502 Cortez Rd. W Suite 102 Bradenton, FL 34210. 301-347-7166. Toll free: 866-APF-3635. [email protected]

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A Combination of Triggers

WEBCONTACT INFO. 4502 Cortez Rd. W Suite 102 Bradenton, FL 34210. 301-347-7166. Toll free: 866-APF-3635. [email protected]

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Healthcare Conversation Tracker

WEBInstructions. It is helpful to keep detailed records of your conversations and interactions with doctors, nurses, counselors, and any other healthcare staff. It is also important to keep …

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