Patient Information

The Cardiff Porphyria Service takes referrals from your clinician. If you wish to be investigated for porphyria and/or have a relative already diagnosed with this condition, please contact your GP to discuss how to proceed. It is vital that we are told who your affected relative is (name, date of birth and the type of porphyria).

There are a number of sources of information about porphyria available for patients, some of which are listed below.

• The British Porphyria Association provides support for patients and their families.
• Identification jewellery for individuals with porphyria can be obtained from the charity Medicalert:
• Safe drugs lists, patient advice leaflets and advice for clinicians can also be accessed via the European Porphyrin Initiative website.
• The British Skin Foundation 

Patient Leaflets

For Erythropoietic protoporphyria and X-linked dominant protoporphyria British Association of Dermatologists Guidelines and standards patient information leaflets 

For Porphyria cutanea tarda British Association of Dermatologists Guidelines and standards patient information leaflets

For Acute Porphyria European Porphyria Network