How can you connect with the AIP community?

If you are diagnosed with AIP, you’ll want to find out as much as you can about the disease. You can get help and information from organizations in the AIP community.


The mission of the American Porphyria Foundation (APF) is to improve the health and well-being of individuals and families affected by all types of porphyria, including AIP. The APF focuses on enhancing public awareness of porphyrias, developing educational programs and distributing educational materials, and supporting research.

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The mission of The Porphyrias Consortium, part of the Rare Diseases Clinical Research Network, is to develop new strategies and methods for diagnosing, treating, and preventing illness and disability resulting from the porphyrias, including AIP. Six of the leading porphyria centers in the United States, as well as three satellite sites, are part of the consortium.

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