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.

Helpline support

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

Centres of expertise

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.

Learn more

Patient stories

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.

Read stories

Benefits and concessions

If symptoms of porphyria are affecting your daily life (including your ability to work), you may be trying to tackle the benefits system for the first time.

Here we provide an overview of the types of assistance available and direct you to places/resources that will be able to help you more.

Learn more

Awareness videos

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

See more videos

Looking after your mental health

Living with a rare disorder or coping with circumstances beyond your control can have a detrimental effect on mental wellbeing and leave you feeling overwhelmed. Here we bring together various resources that can help you to manage your mental health and live well with porphyria.

Learn more

Useful websites

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

Learn more

International organisations

We are aware of and coordinate with many other patient organisations around the world, as well as many international porphyria centres, such as the Global Porphyria Advocacy Coalition (see right). Many others are listed here.

Learn more

Global Porphyria Advocacy Coalition (GPAC)

The Global Porphyria Advocacy Coalition (GPAC) is an umbrella organisation that is dedicated to improving the lives of those affected by the porphyrias.

GPAC works collaboratively to strengthen the international porphyria voice and reach, by supporting and coordinating national PAGs around the world. They aim to better serve the porphyria community, by acknowledging the strength in aligning and working together on important global projects. They welcome new groups and advocates to join GPAC.

GPAC provides an important and unified voice for porphyria – together, we are stronger!

Learn more