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
Medicalert
1 Bridge Wharf
156 Caledonian Road
London
N1 9UU
Freephone: 0800 581420
Tel: 020 7833 3034
Fax: 020 7278 0647
Email: info@medicalert.org.uk
Safe drugs lists, patient advice leaflets and advice for clinicians can also be accessed via the European Porphyrin Initiative website.
The British Porphyria Association provides support for patients and their families.
Patient Leaflets
Advice for patients with EPP can be found on the British Association of Dermatologists’ website.
Porphyria patient information - Porphyria Cutanea Tarda
Porphyria patient information - acute
