Latest news

Scenesse update (24 Dec 17)

NICE have published a provisional evaluation for making Scenesse available on the NHS. The evaluation follows the appraisal meeting held on 23rd Nov and is now available on the NICE website. This takes the form of an Evaluation Consultation Document (ECD).

NICE are proposing that Afamelanotide (Scenesse) is not recommended for use in England, which is incredibly disappointing. However, the decision is not yet final and we are formulating an appropriate response.

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 a paid administrator for six hours per week).

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.