Porphyria - Accurate Information Statement

  • Friday, April 23, 2021

The Global Porphyria Advocacy Coalition, with the support of the APF, other global porphyria advocacy organizations and the approval from international clinical and research networks, has produced the following Accurate Information Statement:

The global porphyria community is aware of potentially dangerous information being circulated across social media platforms and on various websites regarding the diagnosis, management, and treatment of the porphyrias. Unfortunately, some of the information is inaccurate, misquoted or taken out of context. Such information could be medically dangerous if taken as advice or guidance without input from a porphyria expert or qualified healthcare professional.

If you have concerns about your care, testing or general porphyria management, please connect with a recognised porphyria specialist/expert centre or your national porphyria patient organisation. These organisations will be best equipped to guide you toward appropriate testing and safe management/treatment for your porphyria.

Full Statement and Background Information