FINALIST 2026
This powerful short film captures a landmark moment for the porphyria community. In October 2024, the British Porphyria Association (BPA) achieved something previously thought impossible: an outdoor residential activity weekend for young people living with erythropoietic protoporphyria (EPP). The film opens by explaining the stark reality of EPP: a genetic condition in which even small amounts of sunlight damage blood vessels and cause excruciating, burning pain. With no NHS-funded treatment available in England, Wales, Northern Ireland or Ireland, those affected must avoid sunlight, often experiencing extreme isolation, especially during childhood and adolescence.
Against this backdrop, the BPA created a first-of-its-kind, fully sun-safe outdoor experience. Thanks to dense woodland cover, expert planning, and a deeply knowledgeable support team, children and young people who rarely have the chance to play, explore, or simply be outdoors, were able to do so safely.
The film shows the profound sense of belonging that emerged as participants connected with others who truly understood their daily challenges. Families, carers, medical experts and young people learned from one another, building relationships that extend far beyond the event itself.
More than just a weekend away, the Alfresco activity event embodies the BPA’s mission: to bring people out of isolation, to create community and to support the physical, emotional and psychological wellbeing of those living with porphyrias. This film tells the story of resilience, innovation and hope. It celebrates what becomes possible when barriers to nature, connection and understanding are thoughtfully and compassionately removed.
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].
We align with the following UN Sustainable Development Goals:
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