Patient information leaflets

We have now produced a number of new leaflets and are currently in the process of updating and producing more.

Introducing porphyria and the BPA contains a general explanation of all of the porphyrias. This is suitable to give to doctors and hospital staff or friends/family wanting to know more about the condition.

We have condition specific leaflets on AIPEPP and VP, with one on HCP currently in production.

We have a leaflet on the use of drugs with the acute porphyrias. This is supported by a copy of the latest UKPMIS SAFE drugs list.

We have also updated our leaflet on testing and inheritance in the porphyrias.

Recently, we have completed a new leaflet on claiming benefits and concessions – there is one version for those with EPP and a slightly different version for those with acute porphyria.

Introducing porphyria and the BPA

Acute intermittent porphyria (AIP)

Erythropoietic protoporphyria (EPP)

Variegate porphyria (VP)

Hereditary coproporphyria (HCP)

Testing and inheritance (including genetic testing)

Drugs and porphyria

Claiming benefits and concessions (acute porphyrias)

Claiming benefits and concessions (EPP)


Keep a look out for more appearing here!