The British Porphyria Association is a small UK charity that aims to support and educate patients, relatives and medical professionals about the porphyrias, so as to improve the lives of those living with the effects of the condition. The porphyrias are a group of rare, mainly genetic, conditions that have life-limiting and sometimes life-threatening impacts on a patient’s life, as well as a significant impact on the lives of their relatives and carers.
To achieve our aims, we try to reach out to and support as many people as possible in order to improve understanding of the porphyrias, for patients and relatives, doctors and medical staff, and hospitals and research establishments.
Support/education: we provide opportunities to CONNECT with others connected to the porphyrias (whether patients, medical professionals or family members) through face-to-face and online events. We try to help patients UNDERSTAND and TAKE CONTROL via scientific presentations, patient experiences, newsletters, leaflets, phone/email helplines, the website and social media.
Research: In responding to our community's needs, we reach out to patients, relatives, medical professionals, hospitals and researchers to support research and help patients find the treatments they need. With leading roles in global porphyria networks, we stay current with best practices/new developments and maintain our ability to provide excellent quality support to patients.
Awareness and understanding: patient/family stories, interviews and academic/scientific talks for in-depth learning about the conditions, for patients and clinicians.
Wellbeing: our projects offer chances to learn relaxation, mindfulness and pain management techniques, plus coping strategies for improving wellbeing and tackling the psychological burden of living with porphyria.
