Porphyria Organisations

Take Me to:

Patient Organisations
Expert Networks
Drug Safety Databases

National Porphyria Patient Organisations

Expert Neworks

  • International Porphyria Network

    Find the closest Porphyria Centre, guidance on the diagnosis and management of porphyrias, and diagnostic and treatment support for countries without a diagnostic centre.

    IPNET Website

  • American Porphyrias Expert Collaborative

    Facilitate best practices in the diagnosis, management and treatment of the eight major porphyrias and their variants by facilitating, and coordinating expert activities in the United States. Provides support to clinicians in North, Central and South America.

    APEX Website

  • British and Ireland Porphyria Network

    Support, training and best practice guidelines for clinicians in Britain and Ireland.

    BIPNET WEBSITE

Drug Safety Databases

PorphyriaDrugs.com

Available as an app for your phone. Includes the NAPOS and APF databases.

Visit

NAPOS Database

Available in English, French, Swedish and Norwegian. Database of the The Norwegian Porphyria Centre (NAPOS).

Visit