Text on a green and white background reads: "Empowering porphyria patients. BPA Connect Alfresco. Residential Activity Weekend. 12-13 October 2024. Thorpe Woodlands, Thetford, Norfolk. Help us raise £20,000. A line of fir trees runs along the bottom of the image.This year, the BPA is concentrating its fundraising efforts on one clear goal: BPA Connect Alfresco 2024!

In other words, we are running a fundraising campaign that will enable us to take a group of young people with EPP on a residential activity weekend, so they can safely experience the mental and physical benefits of the great outdoors – and we need your help.

Help us reach our £20,000 target and empower young people with EPP to understand their condition, connect with others, build the confidence to take control, and share their story.


SCENESSE updates


Three speech bubbles (red, blue and green) display the words: “We want to hear from you!”. Red text underneath reads: “SURVEY: What is it like to live with cutaneous porphyria?” In the bottom left corner is a red asymmetrical cloud-like shape, and in the bottom right corner is the University of Dundee logo (a blue and white illustrated shield with “University of Dundee” written next to it).


20th Anniversary Festival - 14 October 2019

We’re proud to be able to share some amazing footage from our 20th Anniversary Festival.

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Who we are

The British Porphyria Association (BPA) is a national charity for people with porphyria.

It was set up in 1999 by a group of patients and relatives who felt isolated and had experienced difficulties due to their porphyria, and had found there to be a general lack of understanding and information available.

The BPA became a registered charity in 2001, and is run largely by a committee of volunteers (supported by part-time paid administrators).

Our aims


Our primary aim is to support and educate patients, relatives and medical professionals about the porphyrias, so as to improve the lives of those living with its effects.

Although the disorders can in some cases be very severe and are often portrayed in a dismal light, there are many reasons to be optimistic. With the right information most porphyria patients can still live life to the full.

What we do

To achieve our aims, we try to reach out to as many people as possible in order to improve understanding of the porphyrias, including:

  • patients and relatives
  • doctors and medical staff
  • researchers

To do this, we run patient and doctor education days, publish patient information leaflets and newsletters, and run a patient support helpline, to name but a few of our activities.