Welcome to the website for the Porphyria Support Group of New Zealand

You are likely reading this information because you or a loved one has porphyria.

Our aim is to support you in discovering and learning about porphyria, its impact and effect on our lives. We also provide a bridge between sufferers, with a New Zealand focus.

If you would like to learn more about porphyria, we’d like to help – do not hesitate to contact us.

What is porphyria?

Porphyria is a rare disorder (approx 1:50,000 New Zealanders are affected) of heme (or haem) biosynthesis. The main role of heme is to become part of hemoglobin, which carries oxygen throughout the blood. In porphyria, there is a defect in the pathway to making heme, which causes a build-up of porphyrins that over time become toxic to the body. The reactions and symptoms of porphyria come about because of the accumulation of porphyrins. There are several types of porphyria, each representing a specific defect in heme production.