Get information

One of our main aims is to help educate patients, families and medical professionals about the porphyrias. Use the links below to navigate to helpful information and resources relevant to your needs. If you cannot find answers to your questions, please contact us to learn more.

Our support team are ready to provide information, guidance and support to patients, families and medical professionals.

Helpline: 0300 30 200 30

Email: helpline@porphyria.org.uk

The porphyrias are a group of relatively rare genetic disorders.

Porphyrias are broadly divided into two categories:

  • Cutaneous (skin) porphyrias
  • Acute porphyrias

Each of the porphyrias is slightly different. For more detail on each type, please read on.

Also find answers to some of the most commonly asked questions about porphyria.

Living with a porphyria can mean having to make some lifestyle changes or can mean having to be more aware of certain issues. Learn more about some of the common issues facing people with porphyria.

Accurate diagnosis is vital to managing porphyria. Despite this importance, testing is often something which causes confusion among patients and medical professionals alike.

The BPA is dedicated to working with medical experts to provide leaflets and helpful resources for each of the porphyrias.

Get information on the latest medical research into treatments for porphyria.