Ipnet Newsletter June 2026
18 June, 2026
Message from the President Dear colleagues and friends, Over the past few months, the Ipnet Board has been working intensively on Ipnet’s new strategic plan for the coming years. As
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.
News
Guidelines for the management of acute porphyria
6 May, 2026
Dear all Ipnet members, The IPNET paper Guidelines for the management of acute porphyria: recommendations from the International Porphyria Network has now been published in Lancet Haematology. It can be accessed free of charge for 50
IPNET newsletter, december 2025
12 January, 2026
Dear all Ipnet members, It is a great pleasure for Ipnet to circulate the December 2025 issue of the Ipnet Newsletter. Enjoy your reading and feel free to distribute !
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.
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.
Events
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