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.

Information and services that may interest patients and families include:
  • A safe/unsafe drug list for patients with for individuals with AIP or other acute porphyrias
  • A database of over 6,000 physicians, researchers, and porphyria experts who treat the porphyrias
  • A caregiver support forum that allows participants to ask questions and share advice and experience
APF Support and AssistanceAPF Patient Portal

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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Information and services that may interest patients and families include:
  • An up-to-date list of unsafe, possibly unsafe, and safe drugs for individuals with AIP or other acute porphyrias
  • A list of more than 2,000 doctors, organized by state and city, who have expertise in or knowledge about treating individuals with porphyria
  • A caregiver support forum that allows participants to ask questions and share advice and experiences
Information and services that may interest patients and families include:
  • A contact registry that patients and families can join to stay informed about new and ongoing research studies, study findings, and other announcements and activities
  • Descriptions of currently open research studies and how to participate in them
  • Links to patient support and advocacy groups
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