The British Porphyria Association

The British Porphyria Association (BPA) is a national charity that supports patients with porphyria and their families across the UK and Ireland. The porphyrias are a group of rare genetic conditions that affect the haem production pathway. The conditions cause painful, life-limiting, and sometimes life-threatening impacts on a patient’s life. These exceptionally negative effects on physical health impact family and social relationships, financial stability, and psychological and emotional wellbeing.

We work to empower our porphyria community! By helping people to UNDERSTAND their condition better, access appropriate and timely care, and CONNECT with others, we can help to improve the lives of those affected. We provide patients with valuable information, resources, and networking opportunities to develop skills and strategies to understand their condition, to TAKE CONTROL by learning their limits, increase their confidence, increase acceptance of their condition, and engage with medical professionals for the best future outcomes.

We also promote awareness of porphyria among medical professionals and contribute to medical research into this rare condition to improve the diagnostic journey.

The BPA can be contacted via our helplines: 0300 30 200 30 or [email protected].