Information and resources

Patient information leaflets

These leaflets aim to help you manage your porphyria and explain to others how you are affected.


We produce two newsletters a year containing patient stories, BPA news and updates in the field of porphyria.

The newsletters can be downloaded as PDF files.


We are currently developing a series of factsheets. These will cover areas relating to specific aspects of living with a porphyria.

The factsheets can be downloaded as PDF files.