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 AIP, EPP 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)
Acute Intermittent Porphyria (AIP) – Easy Read Version (9-10 years)
Erythropoietic protoporphyria (EPP)
Hereditary coproporphyria (HCP)
Testing and inheritance (including genetic testing)
Claiming benefits and concessions (acute porphyrias)
Claiming benefits and concessions (EPP)
Keep a look out for more appearing here!
