Get support

In addition to providing information to help educate people about porphyria, we aim to provide a support network to help people deal with the physical, medical, psychological and emotional sides of the condition. Use the following links to find out more.

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

Helpline: 0300 30 200 30


There are a number of centres in the UK and beyond with specialist porphyria knowledge and the ability to provide advice on all aspects of porphyria care.

Living with porphyria can be challenging and lonely. Some of our members have shared their stories and experiences with different aspects of porphyria with us.

Here we provide links to a number of patient experiences videos and vlogs that capture the challenges of living with porphyria.

There are a number of organisations in the UK and around the world able to provide additional support to people with porphyria.

We are aware of and coordinate with many other patient organisations around the world, as well as many international porphyria centres. Many are listed here.