Welcome to the

International Porphyria Network

Ipnet, the International Porphyria Network, is a non-profit learned association (or scientific association), having its office in Innsbruck, Austria.
Ipnet will promote fundamental and clinical research in the field of porphyrias, improve knowledge of the porphyrias and facilitate best practice in their treatment and diagnosis by accommodating and interconnecting expert activities across the world in the service of porphyria patients.

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News

Help for Clinicians

14 July, 2025

Refer a patient:We offer support to clinicians looking after patients with suspected or confirmed porphyria in countries where expert advice is not available. We can help with laboratory testing, interpretation

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Olgabraj, CC BY-SA 4.0 , via Wikimedia Commons

ICPP 2024 Pamplona

14 September, 2024

The International Congress of Porphyrins and Porphyrias took place on September 21-25, 2024 in Pamplona, Spain, bringing together clinicians, researchers, scholars, patients and their families for three days networking and

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Patients

Here you’ll find clear, practical information about porphyria—what it is, how different types can affect you, and what symptoms to watch for. We also cover diagnosis, treatment options, everyday management, and safety topics like medications and skin protection. Use these pages to better understand your condition and to support conversations with your healthcare team.

Introduction
Drugs and acute hepatic porphyrias
Drugs and acute hepatic porphyrias
FAQ on acute hepatic porphyria
Porphyria Cutanea Tarda (PCT)
EPP and XLP
Congenital erythropoietic porphyria (CEP)
Skin Protection in Cutaneous Porphyria

Professionals

This area provides clinically focused resources on the porphyrias, including current diagnostic pathways, laboratory testing, family investigation, and management of acute attacks. You’ll also find guidance on drug safety and specific disease entities such as PCT and erythropoietic protoporphyria. The content is intended to support evidence-based decision-making in everyday practice.

The porphyrias
Laboratory diagnosis
Investigating the family
Treatment of the acute attack
Drugs and acute hepatic porphyrias
Help for Clinicians
EPP and XLEPP
Skin Protection in Cutaneous Porphyria

Events

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