Who we are

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

It was established in 1999 and became a registered charity in 2001. Until 2015 the BPA was run solely by a committee of volunteers, but we now have a paid administrator for six hours a week to support the volunteers with the workload.

The charity continues to grow and evolve and we now have around 500 members. All of the different types of porphyria are represented in our membership, alongside many medical professionals too.

Our aims

Our primary aim is to support and educate patients, relatives and clinicians about porphyria, and promote research.

What we do

Amongst other things, to achieve our aims we continue to publish patient information and run helplines and education activities.

Meet the team

Our team is made up of a diverse set of people with a wide range of experiences, all brought together due to their porphyria connections.