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BPA featured in latest issue of Rarity Life magazine

“We are delighted with the impact gene-silencing treatments have had on the course of acute porphyria for those with recurrent attacks. It’s a powerful reminder that progress is possible, and hope is real!

But there is still much to be done: raising awareness, improving diagnosis, and supporting those with sporadic attacks and chronic pain.”

Co-CEOs of the BPA, Liz Gill and Sue Burrell, are featured in the latest edition of Rarity Life magazine from Same But Different, talking about their personal experiences of living with acute intermittent porphyria and the transformative possibilities of gene-silencing medication.

Read the full issue and find out more about gene-silencing medication Givosiran and its current availability in the UK on our Treatments & Research page.

CYACELLE SUNSCREEN GIVEAWAY

We are excited to announce that Clinuvel Pharmaceuticals have donated a further batch of CYACÊLLE sunscreen for us to share with those affected by any of the skin porphyrias across the UK and Ireland.

Complete an order form today

SCENESSE NEWS

BITOPERTIN NEWS

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

EDUCATE / SUPPORT / RESEARCH

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.

Find out more

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.

Find out more